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'A Different Kind of Attention Develops Sound Judgment' | 'Suppose I'm Right Here?…' (posted 3/23 & 3/5/2014). Over 680 posts, Public-Interest Investigative Blogging On These Matters Since 2009.

Who? (Besides Harvard, MIT and Other Boston-area Institutes) is Funding and Promoting/Soliciting for Personal Genomics (volunteer your personal, identifiable, genetic code for the PGP, a global database to be shared internationally) — GET Research (fine-tuning and equipping the Nature vs. Nurture debate) as Essential for Global Public Health? (publ. 7/31/17)

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Who? (besides Harvard, MIT and other Boston-based Institutes) is Funding and Promoting/Soliciting for Personal Genomics (volunteer your personal, identifiable, genetic code for a global database to be shared internationally) — GET Research (fine-tuning and equipping the Nature vs. Nurture debate) as Essential for Global Public Health Issue? (title’s short-link ends “-7m3”; published 7/31/2017)

[ “MIT” added to the title at some point, but not the internal record of the title.  With MIT’s involvement with both the Broad Institute (named on its corporate papers in MA) and the Whitehead Institute (which calls itself independent, but uses “MIT” in its website URL(!)), it’s “not just Harvard.”


Well, just the other day I learned more about one of the terms in the post title in the typical way — while updating one post, referring to one website in passing, I took a second, closer look at other parts of the website (“conferences” link), which revealed both the GET conferences and the name of a nonprofit sponsoring them. That’s how “GET” and “PersonalGenomes.org” came up to my attention.

So, in this post expect to hear about:

~|~ PgEd.org ~|~ PersonalGenomes.org/Open Humans Foundation ~|~  the GET conferences ~|~volunteer your personal genetics” solicitation as a recurring theme ~|~ (leaving aside the Broad Institute for a while) more on the Whitehead Institute for Biomedical Research (“Whitehead Institute”) ~|~ and Treatment Advocacy Center (“TAC”) associated with the Stanley Medical Research Institute (“SMRI”) ~|~ Which of the above have (as it applies) boards of director personnel, funders and/or it seems, well-coordinated purposes in common.

~|~ And several images + a table tax returns, because of their support of the Human (and “Personal”) Genome Project, the Coriell Institute for Medical Research (formed 1953, it says, in Camden, NJ). They provide the Biobank, cell lines (and more), funded by, currently it says, seven NIH awards.

I talk about and show some of their financials, and how at least one them went to special efforts NOT to show them, at least on the main website while promoting its cause, scientists, research, and outreach (and soliciting more support, preferably $10K at a time or more). I took a short enough (hopefully) look at the source of Whitehead wealth in the sale of the clinical diagnosis instrument company (“Technicon”) to Revlon in 1980, and what happened to Revlon not long after — because it’s interesting, and relevant.


When and Where? Of these, PersonalGenomes.org/Open Humans Foundation and The Whitehead Institute (“WI.MIT.edu) are in the Boston area (although one of their legal domiciles isn’t in MA but NC) and PgEd.org web page gives contact address at Harvard Medical School Dept. of Genetics (PgEd.org doesn’t appear to be a separate entity), SMRI is in Bethesda MD, TAC which SMRI supports, is in Arlington, Virginia, and the Coriell Institute in NJ (website + tax returns don’t match).

The oldest entity in the list (until I added Coriell to it!) seems to be the Whitehead Institute, (<= EIN#061043412, that’s a link to an older Form 990, which I’ll show below, at Nine Cambridge Center, Cambridge MA)(website says 455 Main now) started in, says its Form 990, 1982.  SMRI (per tax return) started in only 2001, and, which is interesting, the TAC, three years earlier, 1998.  Coriell started in the 1950s..

In this post, you will also hear about two more entities who have worked side-by-side for decades to shape government-sponsored research in particularly cancer (smoking cessation), heart disease, biomedical research into genetics, and to push for more and more NIH funding:  

~|~ Research! America (est. 1989), and ~|~ the Albert & Mary Lasker Foundation (it seems 1974)

Briefly, how they came up.

When the Whitehead Institute’s famous founder is looked at, and through basic Google search on my part (I didn’t know who he was…), this also brings up his participation/founding of Research! America (inc. 1989, a VA-based entity with a D.C. legal domicile — and apparently some legislators (or at least “Hon.’s”) on its board over time)*, with its push for doubling NIH funding for biomedical research in five years, and in general PR for BioMedical Research (incl. on stem cells) as a public and global health benefit.

I put that discussion (several annotated images from its timeline) towards the bottom of the post, but it will pull together, I believe other parts of the narrative in a timeline. The website gives a timeline of events, and shows how many other foundations (incl. Bill & Melinda Gates, Robert Wood Johnson, and others, and not a few Congressmen, were involved, and spinoff organizations (at least two 501©4s) in pulling this off.  Where I found this information was on a multi-page, all-text, highly linked (although some have expired) and detailed tracking of networked families, companies and foundations, especially related to the anti-smoking campaign (American Cancer Society), America Heart Association, and pushing money towards biomedical research.  I spent hours (in fact, a full work day just reading, not writing) looking at this after the first exposure nearly a week ago, when I looked at certain parts of it.

It challenges the paradigm — the public promoted website purposes– but in the process uses some volatile and at times offensive language (bilge, shucksters, Nazi fascism of the health system, pseudoscience and more), BUT it also resonates and as an interpretation makes sense with information outside the website, and my strong gut instinct that some things are drastically wrong with the overall picture.  It definitely got me looking further, and more understanding on previously covered topics, as well as on new ones.  I have a title (short version, long version) and a start on that write-up (post in draft status Now Published), at:

 

Much as I enjoy looking at the detailed and colorful photos of cells, or hearing about the discoveries in scientific fields, including genetics…and in part because of the prominence of the Whitehead Institute (and with it, Edwin C. Whitehead, his surviving son John, and other siblings till on the institute’s board of directors (Susan, Peter), I still feel responsible to bring up alternate views of both the above organizations, and their founders’ (and friends’) overall purposes, and how they achieved them.

* (by recall from review of the Research! America returns)

  • the Hon. Paul G. Rogers (d. 2008)
  • the Hon. John Edwards Porter
  • the Hon. Louis H. Sullivan
  • not to mention also former US Surgeon-General, C. Everett Koop.

About Whitehead Institute (pausing to note its website is at MIT):

Whitehead Institute is based at MIT,** but as a separate nonprofit; famous originally for its major contribution to the Human Genome Project.

**Notice MIT’s “About” page (READ!!) mentions the Human Genome project and CRISPR, also its summary of current initiatives and projects, and estimate of $1.9 trillion annual revenue generated by its alumni (over 130,000 — MIT started in 1861 –). That was a 2014 estimate. )

Current research and education areas include digital learning; nanotechnology; sustainable energy, the environment, climate adaptation, and global water and food security; Big Data, cybersecurity, robotics, and artificial intelligence; human health, including cancer, HIV, autism, Alzheimer’s, and dyslexia; biological engineering and CRISPR technology; poverty alleviation; advanced manufacturing; and innovation and entrepreneurship.)

So Whitehead Institute’s location within MIT as a free-standing 501©3 school is a very big deal!)

Another on-line source referencing Mr. Whitehead’s work mentioned the Albert & Mary Lasker Foundation (est, 1974?) as involved in some of the same politics and public health promotions (although around a different cause), so within the past few days, I was also looking at its website, board of directors, and you betcha, tax returns.


BLOGGING CONTEXT/TIMELINE ON THESE TOPICS:

Over time and two related (but not consecutive) FamilyCourtMatters.org posts I have shown several of these institutes’ (entities’) tax returns in table format, so people might see:  Total Assets, State, and (if they clicked through) on page 1 of any individual return, (for Form 990 filers, and only FY2008ff for them — Form 990PFs for private foundations don’t show this, or Form 990EZs…) a year of incorporation and related website if identified on the Form990’s header info.), and quickly (from page 1 summary) whether its main revenues were contributions, program services revenues, or something else (such as investment-related income, whether from dividends or sale of assets at a profit).  In general this locates any organization in time, space, characteristics and size, activities as told the IRS (not the public) including whether it bothered to follow IRS form instructions.  It also reveals if looked at further, or earlier returns are checked out, subcontractors, if there are grantees, related organizations, and where they are holding their assets.

The two related posts (I’ll link to these again further below, in the same format):


These are my most closely related recent posts: #1 posted 7/23 and updated 7/24-76:


With similar, multi-component title reflecting how many components (institutes, websites, elements) there are to these situations, although two university names continue to come into play: Harvard, and UCBerkeley,  #2, posted 6/18/2017:

Related post name and shortlink Speaking of Projects and Nonprofits Funded by The Broad Foundation…. How about The Broad Institute (and its role in waging Patent Wars over CRISPR (Gene Perturbation, RNA/DNA cutting-edge research) with UCBerkeley?)(case-sensitive short-link ending “-720” that “0” is a zero, not O as in “Ohio.”).  (Published 6/18/2017)

…..And of course, MIT (Massachusetts Institute of Technology)

Whitehead Institute

Just one of its tax returns gives several points of reference you won’t find on “Wikipedia,” or most likely analyzed on its own website. Patience, please! with a bit of tax return show-and-tell. These “factoids” shown from Forms 990 provide a series of good mental “memory tags” helpful in putting time, size and place on any organization points of comparison (like an “LCD,” lowest common denominator) relative to other institutes/nonprofits and its position relative to public funds.

  • Without objective, basic “quantifiable” points of comparison outside the self-descriptions on the websites, or personal knowledge (eyewitness) experiential information of the programming or professors, directors (etc.) of ALL members of the entities working the field, how can they be understood, outside of hearsay and PR? They are not “the whole story,” but they give all other stories a basic structure.  “Read my lips!  Read the 990s
  • WITH such points of comparison, there is at least a basis for conversation or discussions with people who may not share common experiences, or outside one’s professional niche/s or “expertise.” It’s a descriptivevital language (including vocabulary) for transmission of meaning across time and distance. It helps with categorization and understanding of reality — including the reality of public economic support of private infrastructure.  This language is apparently NOT meant for common understanding across the US population.  Instead, we are often given promotions and propaganda to justify public policy and the costs. (This point added post-publication during a review).
  • What’s in common with other for-profit industries working with the organizations towards a global or public health goal? For assembling any concept of who’s been doing what, and to a degree, how (financially) and under what cause (which any public (vs. private foundation) 501©3 must state as its program purpose, that is, reason for existing in the first place), getting to the tax returns before the website rhetoric cannot hurt.
  • One thing I also tend to notice on any “for the public good” organization website is how forthcoming is it about its own financials (especially the 990s) as opposed to advertising “G&S” (Goods & Services) and soliciting donations or participants, i.e., selling.

The Whitehead Institute hasn’t posted an annual report since FY2014 (I write in nearly August 2017) and not one Form 990 is shown.  Getting even to the Annual Reports is a reach, and there are no posted audited financial statements anywhere on the site, that I can see.   Look at the top and bottom of the home page; between this like a newspaper layout of awards or recognitions for its famous people involved or their accomplishments.  I have no problem with that — BUT not when financials are omitted, or even a reference to the EIN#.  Many organizations will post this — why doesn’t this one?

To show this, I’ve annotated the next two images from the top and the bottom of the main page, one from the donor form, and a single image from their magazine which “special” donors (who give from $2.5 – $10K) get.

The website has beautiful, colorful and intriguing images from their research, and plenty of their people also.  My annotations on the image obscure much of that.  If you want to see the vivid pictures without all my notations, go to the main website which is easy to remember:  WI.MIT.edu!

To ensure I wasn’t making a false claim either here, or on the annotations about the “MIA” financials, I went also again to the “Support” Page (another place sometimes an EIN# may be mentioned).  Of course I have their EIN# already, but the point here is, does the W.I. think it’s worth a token gesture or not?  That answer is:  “Not!”  Even a link labeled something like “Financials 2014” under that Support menu looks like a single page (fine print) from the Annual Report, with two piecharts and a list of personnel.  That is not the only place some of the labeling and statements are vague and misleading.

A good question might be:  If this is how the institute handles communications and solicitations — i.e., misleading statements and labels, missing information which the public deserves to know — how reliable is their scientific statements and information? (I have the same issue with more than one organization in the “~|~” -marked list, above). Of course, I have no scientific expertise to judge, or reason to suspect that the science behind this institute is less then stellar.  BUT, my other comments stand.  Its failure to divulge financials I believe is odd and inappropriate. Having looked at the tax returns already, I suspect that one motive might be not wishing the public who might donate more to comprehend just how much public financing is already involved. Its failure to provide CURRENT annual reports as well (at least) is also disrespectful, and the organizational history narratives, spread over many pages, are designed not to go very far in depth, and are notably absent backup links.  

I noticed this tone and quality on the website from the start; it bothered me knowing what level of diligence and detail must occur for the level of science (and technology) taking place both here, and at the prestigious MIT.  I think it is disrespectful overall, and smacks of arrogance and condescension — while I am, as who wouldn’t be, still interested in the discoveries and descriptions of those discoveries in the field.

This is NOT a valid format OR substance for presentation of significant financial information. Nor is any offer made how to contact the organization and get these.  Apparently, we’re not supposed to think about these things, but what a privilege it is to be involved, and support it out of pocket. The impact of this will be seen when (a) you look at the Whitehead Institute’s tax return (one provided below), and (b) when you read about Research! America’s push for doubling that NIH funding within five years (said to have been achieved by 2003). It’s entirely fair, when being solicited in conditions like this, and honest, for any U.S. citizen to say, “I already gave at the office!” because we did!

A third W.I. image I’ll provide is from the Support Page, again featuring large pictures, lots of white space, and the “prestige appeal” — the more you pay up, the more privileges you get to learn about the Institute…$2,500-$10,000 is (only) “BOA” Board of Associates, but $10K+ is “Laboratory Partners” and you get to affiliate with (one) lab and greater access to it and its scientists (from the on-line giving community).  The mentality is exclusive, special community of supporters, elite, etc… For example, under Board of Associates Page ($2,500 will get you there):

The mission of Whitehead Board of Associates (BOA) is to enhance the Institute’s ability to improve the health and welfare of all human beings through leading-edge research, education in the biomedical sciences, and extending the boundaries of knowledge for future generations.

ROLE OF BOA MEMBERS

  • Associates support the Institute’s scientific mission through personal philanthropy and by sharing their leadership skills in science, business, finance, education, communication and other fields.
  • Associates increase the Institute’s visibility by sharing their own enthusiasm for the exceptional accomplishments of Whitehead scientists at the forefront of discovery.
  • Associates help the leadership of Whitehead Institute develop new relationships with individuals, academic institutions, foundations, and corporations dedicated to furthering the advancement of biomedical science in the United States and abroad. (etc.)

And BOA gets one subscription to Paradigm magazine (which is published annually and posted on-line anyhow.  I suppose, however, since the latest one posted (as with annual reports) is only Spring 2014, BOA’s might get it a little sooner?

Like the website, it intersperses lots of big photos with text (in three columns on an average page, only 21pp long).  The 2014 one features helping open a stem cell center in a Moscow (Russia) suburb (“birth of a university”) and a 30th anniversary reunion of the Whitehead Fellows, saying 30 attended.  Of these, a photo of (count-’em) is found with all of two women (or 10% only), and few men or women of color (see any African-Americans in there)?  No names except David Page on the left, and most recent fellow, Sebastian Lourida. (photo by Ceal Capistrana of W.I.):

Para. 1 under the “fellows reunion” article: “Nearly 30 alumni returned last fall to celebrate the 30th anniversary of the storied Whitehead Fellows Program, which offers exceptional PhD recipients their own lab and support to pursue wildly creative research. During a special two-day symposium, participants described their current research and, perhaps more signi cantly, shared what membership in this exclusive club has meant for their careers.”

Notice the middle column:  “Wholly independent in its governance, finances and research programs, Whitehead shares a teaching affiliation with (MIT).”  “Wholly independent” should be considered in terms of “FROM WHOM or WHAT?” It’s absolutely not independent financially from government grants, AND fees and contracts, it probably means “from MIT” which was part of vision of its founder (Mr. Whitehead)  Control of operations….  which also (keep reading, it’s in this post) reflected his business life also (before selling his company Technicon, generating the start-up funding for the Institute, it was about 84-85% owned by the founder, until it was sold to “Revlon, Inc.” which then (within five years) suffered its own LBO courtesy junk bond king Michael Milligan)….

Meanwhile, the whole time, the US Government (and/or other governments, including state) are primary contributors to Whitehead Institute, which a simple look at the 990s would show (and I have one below):

The three heavily annotated messages are conveying (pls. do read) how evasive this institute is about its own financials, while advertising its research, discovery, and scientists (and with a hand out, that is, seeking handouts: contributions (check, donate securities, credit or debit) for yet more money, and declaring it depends on this to exist, while the tax returns say otherwise.

Wi.MIT.edu home page, top (click to enlarge)

WI.MIT.edu home page, Bottom (click to enlarge)

WI.MIT.Edu Donor Gift Form – Want to Become BOA for only $2.5K, or Lab Partner for $10K+?? Or transfer some securities? Click to enlarge!

 


Again, the Whitehead Institute helped produce the original Human Genome Project.   (WI website, Center for Genome Research tab under “About” “History” — key person, Eric Lander:

“In the late 1980s, sensing an impending revolution in genomics, Whitehead Institute leadership committed to the creation of the Whitehead/MIT Center for Genome Research.

“By 1990, the Center was up and running under the direction former Whitehead Member Eric Lander, who had come to the Institute four years earlier as a Whitehead Fellow. Within a few years, the facility became one of the largest in the world, and an international leader in the fields of genetics and genomics. || In addition to sequencing the human genome, the Center played a leadership role in sequencing key model organisms such as the mouse, and other organisms essential for locating regions of the genome that are conserved across multiple species…..

{{A short, simplistic page focusing on just one individual, with no further links, recites more discoveries and a statement from Lander about his fortune in having landed there, then last paragraph…}}:

In November of 2003, the Whitehead/MIT Center for Genome Research became the cornerstone facility of the Broad Institute, a research collaboration between Whitehead Institute, MIT, and Harvard University. In 2008, Eric Lander left the Whitehead faculty and Whitehead Institute relinquished its governance role in the operation as the Broad Institute became a fully independent institution.

Wikipedia on the Whitehead Institute also features its contributions to sequencing the human genome:

The institute is one of the world’s leading centers for genomic research. Its Center for Genome Research was active in the Human Genome Project, and reportedly contributed one-third of the human genome sequence announced in June 2000.[3]

In June 2003, Eli and Edythe L. Broad pledged $100 million to build the Broad Institute, a joint venture of Whitehead, MITHarvard and local teaching hospitals. The new venture’s mission, led by former Whitehead Fellow Eric Lander, is to expand tools for genomic medicine and apply them for the treatment of disease. In 2008, Eric Lander left the Whitehead faculty, and Whitehead Institute relinquished (etc. see end of above quote….)

For the institute, Edwin C. Whitehead chose Nobel Laureate (in what, not referenced there) David Baltimore, and David Baltimore chose four founding fellows, including one man from Germany (explore the WI website, it lists them). But Whitehead as involved before the 1980s through MIT. Having made his fortune, a “pioneer in the modern clinical diagnostics industry” (typical of this website, the name of his major company, or how much he sold it for — not mentioned.  It’s “Technicon” and was sold to Revlon in May 1980 for $400 million, at which time an investment firm was set up (NYT obituary; 1920-1992).  Whitehead died still young (age 72) and it notes he was married four times and divorced three.

A brief narrative, again, tells the story with positive spin only, and only a brief reference to how many universities rejected the prospect until he finally got to David Baltimore.   http://wi.mit.edu/about/history/vision

Revlon (founded in 1932) from Funding Universe.com initial outline doesn’t mention the Technicon 1980 purchase, but I notice it does acknowledge  it, and that not long after in 1985 there was a hostile takeover by “Pantry Pride” of Ron Perelman’s McAndrews and Forbes Holdings (see image) after which it went private for about ten years.  Also in the 1960s, it  purchased U.S. Vitamin & Drug, which then bought a Mexican pharmaceutical company, then traded some of this for a group of drugs that Ciba-Geigy had to divest for anti-trust reasons.  So we can see the pharma interest along with the cosmetics:

Revlon, Inc. from fundinguniverse.com (Click to enlarge) only goes through year 2000.

The company’s first successful acquisition came in January 1966, when Revson bought U.S. Vitamin & Pharmaceutical Corporation in exchange for $67 million in Revlon stock. The buyout brought Revlon a company with annual sales of $20 million, most of them coming from a drug used to treat diabetes. Within a year, U.S. Vitamin proved its worth with its acquisitions of Laboratorios Grossman, a Mexican pharmaceutical company, as well as comparable concerns in Argentina and Chile. In 1971, Revson traded U.S. Vitamin’s diabetes drug and $20 million cash for a group of drugs Ciba-Geigy was required to divest for antitrust reasons. Another U.S. Vitamin acquisition was Nysco Laboratories and its Nyscap process for timed-release medication. This, in turn, led to the introduction of vasodilation drugs. Fully disposable injectables, introduced in 1968, also came from U.S. Vitamin.


….High profits notwithstanding, 1974 was a difficult year. Charles Revson was diagnosed with pancreatic cancer. Determined to leave a worthy successor, he picked Michel Bergerac, a president of International Telephone and Telegraph’s European operations. Terms of Bergerac’s contract included a $1.5 million signing bonus, an annual salary of $325,000 for five years, bonuses, and options on 70,000 shares.

Company profitability was Bergerac’s chief interest. Impressed with Revson’s experienced management team, he induced them to stay by introducing the Performance Incentive Profit Sharing Plan, which allotted each executive points based on profit objectives achieved for the years 1974 to 1976. He also cut company spending with tighter inventory controls and instituted an annual savings of $71.5 million by the elimination of 500 jobs. Bergerac installed a management-information system requiring that all managers report monthly on problems, sales, and competition.

Through acquisitions, Bergerac tried to reduce Revlon’s dependence on the increasingly crowded cosmetics market.  Coburn Optical Industries was an Oklahoma-based manufacturer of ophthalmic and optical processing equipment and supplies which cost 833,333 Revlon common shares. Barnes-Hind, the largest U.S. marketer of hard contact lens solutions, was bought in 1976 and strengthened Revlon’s share of the eye-care market. Other acquisitions included the Lewis-Howe Company, makers of Tums antacid, acquired in 1978, and Armour Pharmaceutical Company, makers of thyroid medicines, acquired in 1977. These health-care operations helped sales figures to pass the $1 billion mark in 1977, bringing total sales to $1.7 billion in 1979.

By the late 1970s, company pharmaceutical research and development had extended into plasma research and new drugs for the treatment of osteoporosis and hypertension. The markets for soft contact lenses and their rinsing solutions were also growing. Bergerac compounded a successful 1979 by buying Technicon Corporation, a leading maker of diagnostic and laboratory instruments for both domestic and international markets, in 1980.

…The domestic cosmetics operations also included the government sales division, carrying almost all the beauty lines through military exchanges and commissaries in the United States and overseas. By the mid-1980s, Revlon’s health-care companies, rather than Revlon’s beauty concerns, were innovating and expanding.

(fundinguniverse.com, click image to enlarge, or here to read more)

Then there was the 1985 takeover by “Pantry Pride” as it turns out, an “LBO” (leveraged buy-out) helped with junk-bond pioneer Milliken (who later did two years in jail for securities violations; a legendary situation) saddling the company with over $2B debt after which Perelman began selling it off.  That’s the 1980s for you… (see annotated image).

I just felt like mentioning where some of Edwin C. Whitehead’s wealth came from, and went to shortly afterwards, in selling his company Technicon. I like FundingUniverse.com histories because they are straightfoward, and even-toned (most stop at about the year 2000, and see bottom of page for the sources).

NYT August 7, 1979 Archives on this sale (prospective) also noted that Whitehead at the time owned about 84% of Technicon stock, and that one option for the sale would make him the largest Revlon stockholder, too:

If all public shareholders selected cash, Revlon’s cash outlay would amount to about $50 million.  {{See “HIGHLY LEVERAGED…”}}

As of three months ago, Mr. Whitehead owned 18.6 million Technicon shares, or 84.4 percent of the total outstanding, which would entitle him to receive some $335 million in Revlon preferred shares. This would make Mr. Whitehead the largest individual Revlon stockholder.

Today, with more than 4,600 employees, Technicon is a leading manufacturer of scientific instruments for the automated analysis of blood, serum, foods, drugs, water pollutants and other products. Its headquarters are in Tarrytown, N.Y.

In an interview yesterday Mr. Whitehead said that a “very substantial portion” of his assets from the sale would be placed “at some future time” in the Whitehead Medical Research Institute to be used for “basic biomedical research.”

Here’s an 8/29/1979 abstract (and short news item) Revlon agrees to acquire Technicon at C&EN News, ACS (American Chemical Society) again emphasizing, Whitehead owned most of the stock, however, public shareholders could opt for cash.  It also again states what Technicon did.  Reading more than this abstract requires “credentials you do not have” or $10 for 48 hrs access.  So, abstract only, it is (and that’s © 2017 ACS):

(Moving on….)

RE: HUMAN GENOME PROJECT to PERSONALIZED GENOMES AS A FIELD:

Now the same theme is getting personalized, and going global, with a view to obtaining consent-based participants and sharing that data globally across institutions, all for the public benefit.  So do you think, maybe, at least U.S. residents, citizens, taxpayers, it’s a good idea to pay attention to this organization and learn if you haven’t already more about its founder and board of directors, subcontractors, major employee participants?  

Here are two (annotated) screenprints showing the PGP (Personal Genome Project) gone “Global” with my protests of what is NOT forthcoming on this simplistic description, including the one that disarmingly, talks about “PersonalGenomes.org” as an organization — after it changed its business name to something else.

Participation – Open Data (though less about the founders, launchers, and project initiators than such a project deserves) and Global Network.  Get those three components? The second screen says they have projects at four institutions globally.  (I show “PersonalGenomes.org” tax returns later; just wanted to ensure people about to see Whitehead Institute tax details didn’t tune out or forget the context!  My tone and attitude in the images commentary comes with awareness of what information those returns have already divulged. If it offends, readers might want to suspend judgment until they’ve also seen the records.)

After these two large images, it’s back to a Whitehead Institute “Form 990-sampler.”

I’ve annotated heavily. Still, read the web content first recommended. See related (ca. 7/28/2017) post content and images (click image to enlarge if needed).

Image #2 from PersonalGenomes.org describing the trend, agenda, and evolution from “Human Genome” to “Personal Genome Project” (ideally, globally):

I’ve annotated heavily. Still, read the web content first recommended. See related (ca. 7/28/2017) post content and images.

Some of the pages on Harvard’s PGP project also reference the Coriell Institute for Medical Research:

Coriell.org is the website, 21-0672684 the EIN#; in NJ.

Total results: 3Search Again.

ORGANIZATION NAME ST YR FORM PP TOTAL ASSETS EIN
Coriell Institute for Medical Research NJ 2015 990 58 $39,599,716.00 21-0672684
Coriell Institute for Medical Research NJ 2014 990 50 $37,878,126.00 21-0672684
Coriell Institute for Medical Research NJ 2013 990 42 $38,815,940.00 21-0672684
I did look through the tax returns (back to 2002) enough to get a sense of their activities and resources (majority government funded; not so much as through direct contributions, but government fees and contracts, which earlier tax returns often make clearer than others).   The tax returns (several) said founded in 1953; however, their involvement with the “NIGMS” dates from 1972.
They are maintaining for the NIH one of the largest repositories of materials (cell lines, samples, etc) for use in medical research.  You can explore the site:  here are just four images (screenprints), including two from the Personal Genome Project (just one of many).  I’m including because of its reference to (and linkage to) the Harvard PGP (first PersonalGenomes.org project, as above images showed).
I’m also mentioning it in the context of the push for more and more NIH funding for this agenda by Research! America and others. I didn’t list it in “you’ll hear about” above because this isn’t a close look, just a reference, to the elements involved in the research, and a reminder, my blogging this in 2017 is a dozen years AFTER the startup of the PGP at Harvard, which occurred, apparently, three years BEFORE “personalgenomes.org” decided to incorporate itself.

They supply materials for research as you can see, and other services. The tax returns over time list their most valuable assets as the NJ Cord Blood Bank, and access to use of the research facility.

FY2009 (I took many years’ screenprints, just grabbed one to illustrate) Sched D “other assets.” (Annotations mostly just showing how the displayed URL identifies the tax return’s EIN# and year)

 

 I like this straightforward intro. from Coriell, which also makes a note of its support of the Human Genome Project.  Note:  It’s been around much longer, but some of its work started in 1972ff.  FYI:

Coriell Institute “Welcome” page references the Human Genome Project and that it’s funded by 7 different NIH words, cell lines, etc.


 

RE:  Whitehead Institute, cont’d.:

The board isn’t majority controlled by the family (it has plenty of directors other), however in 2001 there were still three people (John, Peter and Susan) with the last name Whitehead, and one of them was also Chair of the Board.  Same acknowledgment shown on FY2014 return (and it adds they also have a business relationship together).

Whitehead Institute’s tax return classifies it as not a private foundation because it’s a school, obviously appropriate.  Its state tax-exempt purpose under the “program service accomplishments” section (p.2):

Biomedical research and education to foster better understanding of biological organisms, systems, and processes with the ultimate goal of improving human health and well-being.  During the year, there were 117 grants from 69 active grantors.

Program-related expenses that year — $103M. Program service revenue — by comparison, you might say “none” although (see page 1 summary) it was $171K (it earned $440K on interest from savings alone…). Its program service revenues were thus less than 1% (in fact, only between .01 and .02%) of expenses. It is in no way self-sufficient.  And, while the institute may have been started by private individuals and philanthropists and with private startup capital (I DNR – probably), it exists now, and ongoing with substantial public subsidy.  It’s holding substantial investments but that year was declaring more losses than profits on them, despite spending plenty on investment advisors as independent subcontractors.

This comes up later with how Edwin Whitehead, on a separate nonprofit based in D.C., and obviously not without help or coordinated with others, pushed HARD for increasing NIH funding in this realm.  I told you this information was not idle entertainment, but to make a point and for a mental note.

For example, (click on “Whitehead Institute Form 990, FY2001, tax return, that link I provided), you can see from page 1, header, $208M gross receipts, and (for IRS forms back then) within a few lines that OF THIS, $113.6M was “government grants” and $19M “Direct public” contributions.  Other sources of income were, overall, a loss:  Dividends and interests of over $8.7M was offset when $65M of assets (securities) were sold at a cost of $79M for a $13.9M loss.  That year, they declared a “budget deficit” or at least spent more than was taken in, by over $3M.

In addition to the $113M of gov’t grants, there were for FY2001 (FYE 6/30/2002) several ongoing tax-exempt bond obligations showing from the Massachusetts IFA (Industrial Finance Authority) and HEFA (Health and Education Facilities Authority), i.e., its debt.  I.e., this is a large operation and the year here was only 2001), and major public support (majority of resources) is already financially involved.

click image to enlarge. Look up EIN# (or use nearby link in post) to get the whole Form990 for that year.

I didn’t show on the other post show the tax tables for PersonalGenomes.org/Open Humans Foundation (EIN#26-2973607), although I referenced it and posted excerpt of its initial (2008) and most recent posted (2015) Form 990s.  So here is that table, much smaller in size as you can see and right away, I noticed (it’s noticeable!) Total Assets column jumping first up (by over 50%) then down again (by another large chunk) — how does anything so small do that?  As usual, some answers are in the Form 990 details:

Total results: 3Search Again.

ORGANIZATION NAME ST YR FORM PP TOTAL ASSETS EIN
Personal Genome Project MA 2015 990 26 $824,641.00 26-2973607
Personal Genome Project MA 2014 990 28 $1,209,161.00 26-2973607
Personal Genome Project MA 2013 990 24 $500,222.00 26-2973607

If you click through, PGP on the top row actually reads “Open Humans Foundation” now.  More on that namechange later… relates to its primary (most expensive) “program service accomplishment” and, I say, the organization’s real purpose from the start….

Re-reading this post (after published), I was reminded that the organization’s name never was “Personal Genome PROJECT” as shown above.  Again, the Foundation Center got it wrong.

(Comments and two images added Aug. 1, 2017, post-publication):

The 990finder database I use because it displays results in tables like this I can talk about, this time again substituted a PROJECT name for an ENTITY name.  The prior ENTITY name (click through on Row 2 to see) was actually the same as the website name:  “PersonalGenomes.org.” This means, if you knew the legal business name and searched it above, you’d pull a blank (“no results”) answer because of the database inconsistencies (screw-ups?).  It’s a little hard to see how this could be “machine error” — if the uploading and labeling is done electronically or automatically.  It looks to me more like human error, which raises the natural question — deliberate, or accidental? I should write them a formal letter asking why, but haven’t got around to it yet. A project =/= an entity!!

While stopping to say this, I’m going to post images from the MIDDLE row (FYE 2014) return — Page 1 (showing name “personalgenomes.org” as the 990-filer / business name, which matches what I saw in both NC and the State of MA (this is a NC legal domicile entity)) and Page 1 bottom, showing some of the changes from “Prior Year (overspent by over $370K)” to “Current Year.”) Images from Part X Balance sheet are already posted. Page 1 top also shows how few people are involved: 6 on board of directors, and only 4 employees.


 

Total Assets 2013 — $500K.  Next year, up ca. $700K, breaking the $1M mark.  Year after that, down ca. $400K.  What kind of (odd) nonprofit management does this represent, and how’d it happen?Easy enough to see — look, first, at the bottom few lines of page 1 (Summary of Prior/Current year assets – liabilities = net fund balances) numbers, then go to Page 11, Pt. X, Statement of Balance (i.e., Balance Sheet) for the middle row return above (showing $1.2M total GROSS assets and you’ll see near the top, in columns Beginning of Year/End of Year, the End of Year (“BY/EoY” for short), Line 3: “Pledges and Grants Receivable” was BY ___ (blank) and EoY $509K.  So nearly half (5/12ths) of its EOYr assets were in the form of promises to pay. But, that left them real “flush” — so balancing it out, Line 19, “Deferred Revenue” became $759K, and total Liabilities (of which that is part) now $774K.

Screenprints of what the previous paragraph just said (from FY2014, Pt. X Balance Sheet top (Assets, some of them) and bottom (Liabilities, Lns. 17-26, + some of Net Fund Balances), sorry about the poor print image quality (not under my control!).  The smaller images represent the top of the Balance Sheet page:

PersonalGenomes.rg FY2014 990, Pt X Balance Sheet, “Assets” excerpt. Click image to enlarge or here for the whole return.

PersonalGenomes.rg FY2014 990, Pt X Balance Sheet, “Liabilities” excerpt. Click image to enlarge or here for the whole return.



 

Again, in this post, you might also (dep. on length required) hear more on:  ~|~Research! America, and the ~|~ Albert & Mary Lasker Foundation.


THIS post’s name (being published 7/31/2017; slight variations in wording won’t change underlying link):

These are my most closely related recent posts, #1 posted 7/23 and updated 7/24-76:


Published in June, with similar, multi-component title reflecting how many components (institutes, websites, elements) there are to these situations, although two university names that continue to come into play: Harvard, and UCBerkeley, #2, posted 6/18/2017:

Related post name and shortlink Speaking of Projects and Nonprofits Funded by The Broad Foundation…. How about The Broad Institute (and its role in waging Patent Wars over CRISPR (Gene Perturbation, RNA/DNA cutting-edge research) with UCBerkeley?)(case-sensitive short-link ending “-720” that “0” is a zero, not O as in “Ohio.”).  (Published 6/18/2017)

The month-plus gap between these two posts was filled, as I described in some length on #1 above, by my dealing with (writing about, wrangling the details out of postings) CAFRs and the State-Owned or State-Run Banking theme, and pro/con debates on it, which took a while (and at least two posts)…


What is meant by “GET” in today’s post title?  Well….see orange/red logo above and below…

“GET” identifies a conference started in 2010 sponsored/organized by a nonprofit started in 2008.  The catchy acronym  stands for “Genomics, Environment, Traits.”  What the sponsors want to “get,” apparently, requires participants’ consent to have their personal genomes diagnosed, tested, examined, and become part of a global PGP for the betterment of humanity.  Also what they will get and have been getting en route, is fame, funding, and a chance to co-opt major future profits. Also the prospect of ongoing public funding too, not just private.   The conference for April 2016 started on an evening, but was preceded by two-days of Lab and Expo. The “Lab” event was for soliciting personal data (participants for the database) and the Expo, under separate registration, was for companies to advertise in related fields.  This pdf prints both pages together, I also hope to post screenprints showing them side-by-side (or juxtaposed), with their colorful logos:  GET:Genomes Environments Traits 2016 Conference Page, printed July 2017 (I linked to this printout near top of this post also).

I am starting to see how the model for diffusing personal genetic knowledge across many institutions also reflects the parallel diffusing of responsibility, transparency (organizations involved) and accountability across the same.  AND, across the public and private sphere by hooking the public into it through funding of the various institutes and research, although this isn’t obvious usually by looking at just one institute.  Some institutes do NOT take public funding — they don’t need to.  They have well-known sponsors.

So, like in some earlier years’ (2016 and before, as well as earlier in 2017) posts I advocated that the public (people at large, in general, on principle, and on their own “time and dime”) exercise its (we exercise our) rights to do some “social science R&D” of its (our) own — as it is certainly being done on the public — on the organizations, universities, and nonprofit institutes within them or separate from them so vitally interested in the fields of sociology, social science, psychology, psychiatry, psychoanalysis (etc.) and promoting their research findings and practices as science and not, population management and a quasi-religious force to be reckoned with because they incorporate so much of the public’s money and has already built up such an administrative (and some real estate and investment funds) infrastructure.

In other words — and this IS referencing a propaganda technique acknowledged as successful by the father of public relations (Edward L. Bernays) — frequent citing to experts and testimonials in promoting a product is known propaganda technique.  When it comes to government that means, promoting a public policy. THE LARGER, MORE INVASIVE/AGGRESSIVE PROGRAMS MUST BE SOLD AS A PUBLIC BENEFIT, but we have EVERY RIGHT to question whether they are, and in particular, how conflict-of-interest-free were the project initiators and their subcontractors.  We have a right to know and should seek out how they are financed, especially after some of the other governmental “public-interest “stunts” that have been pulled off, in this century and the last decade of the 1900s, in our name and at public cost.  And yes, I’m thinking of things like TMAP/PennMAP, PRWORA, New Freedom Mental Health Commission, (another war) and more…


Like I said (and PgEd.org attempted to explain in “What Is Genotype? What Is Phenotype?” the theme the public is being given is basically the age-old  “Nature v. Nurture” with “we want your samples — will you consent? —It’s for everyone’s good and for science… – this is cutting-edge stuff, don’t you want be a part of it?” mixed into the promotion.

“Genotype” represents the genetic component, “phenotype” the manifestation of it, or as this was thought of when the word came into usage.  The root word of “pheno” comes from “to shine, make clear,” as in, illuminating the cause. (Not that their page explained this). You can see this in the acronym “GET.”  I had instinctively used the word “phenotype” for an analogy, went looking for a better definition. That’s how I came across “PgED” with its simplistic web page look, and explanation of the terms.

I continue to recommend here we keep looking at the geno- and pheno- types of these coordinated entities just as, when it came to “Nurture by the right Nature (gender)” is best social science R&D on the best design for: raising a child; preventing child abuse; preventing domestic violence; promoting healthy communities; reducing poverty/reliance on welfare was sold under a public benefit, a closer look showed where and how the profit motive, and fraud, operated.  My diagnostic tools were crude, simple, but readily available.  LOOK IT UP!

As always, I like to look at the available information (free on-line, at least — with the goal that it’s information anyone else could ALSO access free, on-line) about the sponsoring entities, and how they are funded, and cash flow from one to another, put in a timeline, with the “environment” if you will, of host institutions (Harvard Medical School, UCBerkeley when it comes to CRISPR, and where applicable in this context, psychiatric hospitals.  In a different category because they are typically 501©3s, are legal nonprofit entities with the word “Institute” in their name).


Click logo for Conference page. The logo is labeled “Get2014.”

The acronym “GET” first came across my path looking closer at the PgEd.org page. There is a fine-print link.

Both PgEd and GET are promoting and pushing the participation (individuals volunteering, consenting, to be tested for their personal genomes, I guess) with a view towards sharing this globally, across diverse institutions, for the good of science.

I guess this might be called the opposite of “The Immortal Life of Henrietta Lack” with a similarity in that the volunteers are also unlikely to get a billionth of the billions of dollars of profits likely forthcoming from patented technology aimed at the many fields involved.  Including psychiatry, mental illness/mental health treatment.  Are you catching my drift yet?

 

(click image for Rebecca Sloot.com related web page)

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance.

Soon to be made into an HBO movie by Oprah Winfrey and Alan Ball, this New York Times bestseller takes readers on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers filled with HeLa cells, from Henrietta’s small, dying hometown of Clover, Virginia, to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells. The Immortal Life of Henrietta Lacks tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew. It’s a story inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we’re made of.

The book was published in 2010, and a Henrietta Lacks Foundation ™  also incorporated in 2010, I see.

Follow-up on that foundation proved elusive, as the website only mentions that it is a 501©3 and its board members, policies, etc.  I found it only reported revenues over $50K once (FY2011), when it filed a Form 990EZ with showing “NJ” showing just 3 on the board.  They rec’d $57K and distributed $25K, none of which is detailed (“to whom”) on the form.

The simplified Form 990EZ gives at least two prompts for line-item entry of Grants as part of Program Expenses — on page 1, and on page 2, but although this organization seems to have NO paid staff, rental, professional fees, or paid directors, or publication (etc.) expense — and after describing verbally that they DID give certain types of grants, the amount (as a subset of total organization expenses) is never given on this ONLY available Form 990 (other than postcard declarations) for this still-up-and-soliciting organization.

That’s odd.  I realize it’s a minor point compared to the rest of this post, but it’s attention to these types of details (whether entity is small and recent, or BIG and recent — or older) that have, like the HeLa cells, and the involved descendants and family of Ms. Lacks, an important story to tell, so I’m posting the excerpts.  I may never get back to this organization — but the book was made into a movie with Oprah, and the lack of revenues and incomplete filing of its lone full-sized return is odd.

Total results: 1Search Again.

ORGANIZATION NAME ST YR FORM PP TOTAL ASSETS EIN
Henrietta Lacks Foundation Inc. NJ 2011 990EZ 10 $33,197.00 27-1781502

Page 1 bottom prompts for “Grants”, first line-item under “Expenses” but this form ignores it and doesn’t list any amount. In fact it doesn’t detail ANY basic categories of expenses as prompted leaving me wondering if it’s main purpose is grant-making, and there are not listed professionals, or employees, or rent (etc.), how credible is the tax return? Why wouldn’t a person just fill in those blanks? That’s the least one could do for the privilege of tax-exemption…it seems.

Page 1 Top, only source of revenue is contributions. This should’ve displayed on top of the other image, but I’m not going to fuss with it just now…//LGH.

p.2 showing (on Form 990Z) two major sections, one of which prompts for Grants as a subset of Expenses — and nothing is filled in. It also says in fine print that certain kinds of orgs. (which this is) MUST fill in expenses. There’s no need at this point to use “See Sched. O” option, but someone did (and Ms. Skloot’s signature is on the form). Note only shows 3 directors, in three different states. Here, author’s address isn’t ℅ another firm as on p.1.

They are willing to say grants were distributed, but not how much. Having filed a Form 990EZ and not a Form 990 (which would require a Sched I to list grantees) it’s also not known whether grants went straight to individuals (Sched I. Part ii) or other nonprofits/gov’t entities (Sched I. Part I). Individuals in that form would be anonymous, but the organizations would not.

Again, the Sched O lumps “Program costs and grants” together, as typed in casually, with a small amount as “office expenses” but refuses to separate the grants from other “program costs” if any. Also note the (law?) firm involved…)

 

Through IRS exempt organization select check (link just added to my “Vital LInks” menu on blog sidebar), I found the other years were filed — all as Forms 990-N declaring revenues under $50K.  Meanwhile, the website say send checks to Chicago, IL — but its sole incorporator (Ethan Skerry, Inc.) did so (Dec. 10, 2010) as a Delaware Corporation, and Rebecca Skloot can be contacted (probably her publishers) in NY, and the website designer (“Being Wicked, LLC” which website also gave no clue as to “in which state”) was by a two-person LLC formed in North Carolina, one of the managers being a (white) South-African ex-pat “by way of the UK” web designer and photographer (Lorissa Shepstone) with a degree from Arizona State, if I have it right. This NC LLC was only formed in 2013…I think they did a good job, just wish that any organization soliciting funds would cough up their EIN# and legal domicile.

Downright annoying, however, that book sounds like a good deed in its own category:

Footer to page promoting the book and movie describes purpose.

From NC Corporations Search: Just RebeccaSkloot.com’s web designer (fine print bottom, I looked it up off-site as the “BeingWicked.com” gave next to no clues on In Which State It Existed…

This link to one-page “Sole Incorporation” statement provided on “The Henrietta Lacks Foundat’n.” website.

(Send Checks To (IL) is no longer entity address; it’s NJ)

IRS Exempt Org. showing which years Forms 990-N (electronic postcard) were filed; all are under Ms. Skloot’s name in NJ except as you see, the first.

PGP= PERSONAL GENOME PROJECT (i.e., “moving on…)

So, the PGP sounds, as I said, like this situation, but with more built-in consent. BUT, the complete information about those promoting it hasn’t been told on the various websites, other than how prestigious the universities they are associated with.  

The billions of dollars are going towards those who hold the proprietary information, or — like it seems Edwin C. Whitehead and his father did decades earlier– owned (to either keep and hold, or sell — and they opted to sell) — to technology to be used in these processes.

“GET” conferences — the next one is September 2017 — sponsored by a 501©3 first called “PersonalGenomes.org” (started with only $111 and $1 revenue in 2008, somehow got $1,000,000 on Dec. 31, 2011, and flying a bit under the radar fiscally; changed its name and website for IRS FY 2015; informed the two states in which it holds (a) legal domicile, and (b) principal office (that’s NC and MA respectively) of its namechange in April/March 2016 (respectively), which is, between the 2016 and 2017 GET conference.  Meanwhile a website by the former nonprofit’s name “personalgenomes.org” remains up but is a little unclear whether it refers to a project at Harvard, or an organization.

Two images here show that along with the conference, and under separate registrations, there was a LAB and an EXPO. Lab sought the volunteer participants, and EXPO was advertising.  I have link to whole conference page near top of this blog, but wanted to show the colorful logos (and how many) associated with it, as of again, April 2016:

GET “EXPO” event participants display for April 2016. Notice center logo is “Open Humans” (new name & project of “Personal Genomes.org” change of legal name notifications to MA and NC about this time of year).

GET “LABS” (where people may contact orgs. to volunteer their DNA samples). Notice both Personal Genome Project and Open Humans are among the logos. Displays above the Expo in Conf. materials (see nearby pdf for a printout). 2nd row right looks like Harvard logo?

GET:Genomes Environments Traits 2016 Conference Page, printed July 2017

 

An April, 2016 conference in Boston (and the GET website) apparently led to opportunities for more event promotions, such as Summit on Technology in Psychiatry, November 2017 (see image with multi-colored blue + green spheres).   The collection of advertisement excuse me, logos, is extensive at this conference and (event organized by “eventbrite”), the “you might like this event” list from which I picked just one.


“The Technology in Psychiatry Summit will bring together thought leaders in industry, technology, health care, patient advocacy, academic research and more to build on the promise of technology in the diagnosis and delivery of mental health care. Attendees will examine the current state of mental health care and determine how the use of advanced technology can build a more accessible future.. If you are from academia or the non-profit world, please email the conference organizer, Sarah Vogel, at svogel@mclean.harvard.edu for a code to access a discounted rate. [[ Conference costs from $850 – $1,250. outside academia and well-funded nonprofits — perhaps from NAMI or MHA, what kind of individuals have that kind of spare change? Parents of people with severe mental illness? Why not give people NOT from academia or nonprofits the discounts? Or, won’t they be as good promoters afterwards?]]

In the last post, MANY well-heeled, well-funded entities with an emphasis on those in the Harvard/MIT (and in general Boston) area — plus some in Maryland or Virginia — were mentioned, in fact their tax returns posted, and the famous philanthropic funders, in part, profiled.

 

I had particular interest to follow up on the Whitehead Institute (founded by Edwin C. “Jack” Whitehead in or about 1980) because of related information which turned up (searching his name on-line with his involvement in Research! America — set up to push for “doubling the funding to NIH within 5 years” and in general persuade the public that it was in its best interest to double-down and cough it up for major research on how our personal behaviors (for example, smoking or not smoking, exercise, vegetarianism, etc.) affect our health.

 

What I felt odd was the excessive weight being put behind some of these institutes (Broad, Stanley Medical Research, and Whitehead) by so few people with such specific, targeted agenda — and in association with prominent universities.Meanwhile, the PgEd.org and PersonalGenomes.org websites (also see “Open Humans Foundation,” its new name) had quickly demonstrated at least as to the first of those, an inability to write clearly, use words OUTSIDE the defined word in the definition, or in general, show itself worthy of its host organization — the Harvard Medical School Department of Genetics.

However, the focus on “PgEd.org” included lesson plans for others, to encourage and popularize the theme of “Personal Genetics,” was engrained into the presentations.You may recall (from the related post) that an inability to clearly define “genotype” OR “phenotype” characterized the blog, but no problem promoting the overall agenda — anyone wanna volunteer (“consent”) to getting their personal genome tested and made a part of this, now intended to be GLOBAL database? I will post images, and quotes; be patient — this is a verbal summary, from my recall, of the situations!


Meanwhile, what had also inspired me to do a follow-up post on both the Whitehead Institute and more on the Treatment Advocacy Center and, specifically Dr. E. Fuller Torrey, was in part his position and agenda, and in part ongoing awareness of how tightly controlled by the same people (families) both SMRI and its supported, smaller, entity, the TAC were.   This included, from a tax return I viewed, a woman (author, former journalist) called Doris A. Fuller, Exec. Director until partway through 2015, and the likely reason why is explained in her own words, below.

Treatment Advocacy Center


These two images show in part what TAC wants (see annotations, which are “call-outs” from the fine-print quotes in 2012, and 2013 (right after “Sandy Hook”).

Looking her up, wondering whether this might’ve been a relative (ie., E. Fuller Torrey, Ms. Fuller) and finding she was a successful journalist (<==fact-check) and writer, with a young adult daughter… Her daughter had been on and off meds for mental illness, and this just about 29 years old young woman, who also helped write a book with her mother, in 2015 stepped in front of a train in Baltimore, i.e., committed suicide.

March 29, 2015, “On Losing My Darling Natalie” (posted at TAC, click to read…)


But the mother didn’t lose her daughter to “suicide” but to “untreated severe mental illness,”  or, “terminal mental illness” as she describes it — after previous mother/ daughter times of success, including joint-publication of a book just before Natalie was to graduate from high school.

I lost my darling daughter Natalie to terminal mental illness last weekend. She killed herself one month short of her 29th birthday by stepping in front of a train in Baltimore.

…The book was published the week before Natalie finished high school to great reviews. Amazon named it the best parenting book of 2004. It was nominated for a national prize. It was translated into Lithuanian and Chinese.

And then….

At 22, starting the second half of her senior year of college, Natalie had a psychotic break nobody saw coming. She went in the span of weeks from being a dazzling young adult with the world at her feet to a psych ward patient with an arrest record.

She rebounded quickly from that first episode and moved back home for the summer…(described).


And then the cycling on and off, until the daughter had “had enough,” believed she was “treatment-resistant” and went off them, as I understand the narrative:

And then….

Her second break was worse, the psychosis and hospitalization longer, the recovery harder to achieve, the medications more complicated, the resulting future not as bright. She rebounded again, even if more slowly, and eventually finished her bachelor of fine arts degree. Her state hospital psychiatrist and several hospital staff members drove 75 miles to come to her senior art show. It was a triumph for us all.

But, like far too many individuals and families and professionals who live with or around untreated severe mental illness, the And then’s continued. Although Natalie always responded to meds, she went off them repeatedly, each time falling into a longer free fall, hitting the ground harder, recovering slower.

Eventually, she came to believe she was treatment-resistant. Last November, she announced that if she was going to have psychotic symptoms whether she took meds or not, why take them? She stopped, and her mind began its final, fatal unwinding.

There is only so much content possible in one post.  The SMRI/TAC connection in context of pushing to change laws to accommodate such things as mandated treatment, assisted outpatient treatment, and the career and personality of E. Fuller Torrey, M.D. (including his apparently, love, then hate, relationship with NAMI, his pedigree (stellar) and personality in pushing for what’s wanted, as well as the specific conditions of focus (again, depression, paranoid schizophrenia, and bipolar disorder are key) for which medications should be developed — also deserve a separate post, which should include more tax return excerpts.  I don’t have an M.D. or Ph.D. in a related field (or in any field, presently), but I can and will present evidence that doesn’t require a Ph.D. to read or understand, in a field which any science endeavor has to deal with — the sponsorship of it, and with whom sponsors are networking to put the positive spin and reduce any sense of real conflicts of interest (i.e., with those who stand to profit most from the proceedings) in the arena.

Here are 9 images (and a pdf), I have captioned them, but not annotated:  The top one discusses the NAMI involvement I referenced, and emphasizes Dr. Torrey’s national influence over time.  Click nearby pdf t read rest of the article (or look it up on-site for an annotation-free version!).  The Form 990s excerpts images are (I believe, but didn’t double-check, having made them nearly a week ago), are mostly FY2002.

TAC images for LGH 7/31/2017 post – Pete Early.com – click image to enlarge, but nearby pdf (similar title) or here for the whole article

peteearley.com-Dr E Fuller Torrey Sounding An Alarm or Being an Alarmist

TAC images for LGH 7/31/2017 post – Form 990 search showing recent years’ Total Assets (gross)

TAC images for LGH 7/31/2017 post – Form 990 FY2002 Pg1 top — notice website is “Psychlaws.org” and primary sole support “contributions” (not gov’t), not program services or investment returns

TAC images for LGH 7/31/2017 post – Shows BOOKS are in the care of another entity, SMRI (Bethesda MD). Also see other state must file a Form 990 in

TAC images for LGH 7/31/2017 post – Three non-director/officer highest-paid officers include Jonathan Stanley (heir to Stanley fortune and whose mental health problems (see web pages) in college cause of major focus of some of the family’s philanthropy. (DNR, but no siblings?). he’s also the highest paid at this time, here.

TAC images for LGH 7/31/2017 post – Form 990 (FY2002) Program Service Accomplishments tells what it does

TAC images for LGH 7/31/2017 post – Doris A. Fuller Bio Blurb (#2 of 2, images, chrono order shows pre-TAC), possibly from LinkedIn or TAC website. She had decades (!) of professional writing experience, 24 of them as principal under “DFuller Associates,” presumably her own firm. Notice her start 1978 was “initially a government reporter in Orange County for the Los Angeles Times.

 

TAC images for LGH 7/31/2017 post – Doris A. Fuller Bio Blurb (#1 of 2, images), possibly from LinkedIn or TAC website. Describing her time at TAC, it also shows its purposes, and references her experience as a mother. I have found no reference in (very basic, just name) search results to any father, or her daughters’ siblings. Notice the reference how her daughter’s battle with mental illness (severe bipolar with psychosis)still, apparently, further helped the TAC cause. || PERSONAL COMMENTARY, LGH: As a mother, I empathize, but otherwise I am concerned whether or not the treatments were not part of the problem. I have not spoken out too much on this blog about my own daughter/s situations, but at the point I had major concerns, I had already been ousted (family courts, failure to prosecute child-stealing) from active involvement (or even contact) in their lives, and in that context, I DO realize the background of trauma and abuse, at least witnessing it, involved; which causes me to wonder about funded promotion, nationally, of these diagnoses. AGAIN (reminder, in earlier post referencing “NAMI”, NAMI claimed 1 in 4 persons has a mental illness. TAC (and Dr. Torrey) do not agree, BUT they still advocate for mandatory (i.e., against a person’s will) treatment, including drugging, for “persistent severe mental illness”

 

TAC images for LGH 7/31/2017 post – Form 990 (FY2002) showed earlier website was PSYCHLAWS.org” — this is a “Wayback machine” (InternetArchive.org) generated chart over time of screenshots taken of psychlaws.org. The name also focuses on a purpose of getting laws changed for the desired policies.

This ends the section on Treatment Advocacy Center (for now).  Finally (to keep post under 10,000 words) some words on Research! America, and Mission & Timeline (but not tax return or other detailed background) images from it.

~ ~ ~ ~

Comments, for those who may think I’m too harsh, anti-intellectual, anti-progress, or science because of my focus here: Not so!  There is just more than the obvious type of science in the sense of observation, awareness, and logic (the reasoning process) necessary in our times. With the level of funding available for propaganda, public relations, and coordinated presentation from what looks like many un-aligned sources leading a certain direction — it is important to be aware who are the field hands, or cowboys driving the herd, and who owns it.

It’s easy to see from the web presentations, AND from a continued look at the financial documents (especially tax returns and corporate filings with namechanges, etc.), that an attempt to appear more independent and differentiated from each other than many of them are, i.e., promoting a “crowd mentality”  or groupthink.

One antidote to this “vague awareness” + “everyone’s doing it” = “aw, what the heck!” mentality is finding out who’s who, organization by organization as each comes up, with diligence.

This time, as the field is just breaking out now (1980s forward, and some of it, as recently as 2008 (Broad Institute and PersonalGenomes.org), apparently around 2012 (CRISPR Patents), ca. 2013 (Stanley Fund for the Broad Institute), and so forth — we really have an opportunity to catch it in progress.  The “personal genome project” at Harvard (per the page) only started in 2005. But the groundwork for it, earlier — and that’s in part where Research! America comes in.

RESEARCH! AMERICA:

Research! America’s main revenues are private, not public, and under the classification “membership dues.”  Its main expenses (apart from increasing salary for director Mary Woolley over the years seem to be for its subcontractors, typically advertising, media, opinion polls (i.e., Harris Interactive, and others).  From a brief look at several different years’ worth.  Its website has much more to say about its goals also — this is the PR/persuasion arm for increased public funding for Biomedical (and specifically at least in some years) stem cell research. In earlier tax returns, under “Expenses”  the highest category, along with “salaries” is typically listed as “Other — See Statement _____” (I’m referring to earlier years), which when examined turns out to be “Public Opinion Polls/and Other Research.”).

The Board of Directors at least in 2003 showed John Whitehead, also three “honorables” and C. Everett Koop, all of them volunteers except Mary Woolley…

I took screenprints from the website (I’ve also looked at the tax returns, but am not dealing with them in this post — after several days work on it, this will do for now!) — reading through these shows how many, and from how many different places, the campaign for increasing public funding (especially through NIH) for this field was waged from 1989 – almost current (2015).

Research! America Milestones, #1 of 4 images (by year)

#2 of 4 images (Research!America milestones)

#3 of 4 images (Research! America milestones)

#4 of 4 images (Research! America milestones)

Reminder: I hope to continue these writeups. Tentative titles, but valid links (once the underlying post is now published and active [BUT undergoing post-publication review]), as I said above, at:

Feedback including debating any point raised is encouraged; use the comments field! Links (other than spam or simple self-promotion of your services even if in a related field; I’m talking discussion-style!) are helpful, as well as identifying detail to anything you’re commenting on from THIS post or the two related ones as identified above. Thanks also to re-bloggers (OK WITH LINKS TO ORIGINATING POST!) or others who link to this material and/or any non-tax-deductible donations to this “not-a-nonprofit” individual blogger, username as you see above! I continue to get visits from government entities especially (but not only) within the USA, and universities (from US and different continents), per those little html codes that tell me such things.

(In commenting, please provide something definite, links or quotes help, to counter an argument, which doesn’t include personal or ad hominem arguments. The point is not, do you personally like me, but am I telling the truth and does what evidence I provide support the arguments I’m making, where I do more than just post information FYI!)

Written by Let's Get Honest

July 31, 2017 at 9:01 pm

Posted in 1996 TANF PRWORA (cat. added 11/2011)

Tagged with , , , , , , , , , , , , , , , , , , , , ,

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  1. daveyone1

    August 1, 2017 at 2:04 am


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martinplaut

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