Uninformed Consent — medical/legal parallels
In the last post, I mentioned that it’s perhaps time we stopped presenting ourselves or our children to become the stuff of behavioral modification research, and our problems to fund other’s professions, which prolong the problems. Among other things.
Particularly in the field of Psychology.
Did you read that article yet?:
What Is Psychology?
Psychology has as its aim the understanding of human behavior, and as a secondary goal, the treatment of behaviors deemed abnormal. Almost immediately upon the formation of the field, efforts were made to place psychological studies on a scientific basis. Early psychological studies were conducted by Wilhelm Wundt at the University of Leipzig, Germany. One of his students, G. Stanley Hall, then went on to establish the first American psychological laboratory at Johns Hopkins University.
Hmmm. Wasn’t JOHNS HOPKINS? referred to on yesterday’s posts, about “Ten Key Findings on Responsible Fatherhood?” (Or whatever variation of studying the practice of “fatherhood” that particular, grants-funded report was on…)
The Urban Institute scholar moved over to Johns Hopkins School of Social Policy and continued collaborating and reporting on how poor folk respond to interventions….
This is social engineering, for sure, just as surely at the CFFPP
(just a little verbal confusion there — is it about Family? Or Fathers? Or does the “family” consist of fathers and children only? Do mothers get a mention?)
Either way, it’s to transform society:
(CFFPP) is to help create a society in which low-income parents – mothers as well as fathers – are in a position to support their children emotionally, financially, and physically.
BACK TO IS PSYCHOLOGY A SCIENCE? and its uncomfortable German connection….
Then, in 1900, Sigmund Freud introduced psychoanalytical theory in his book “The Interpretation of Dreams.” This was the first ultimately large-scale effort to apply psychological knowledge to the problem of treatment or therapy.
Human psychology and the related fields of psychoanalysis and psychotherapy achieved their greatest acceptance and popularity in the 1950s, at which time they were publicly perceived as sciences. But this was never true, and it is not true today – human psychology has never risen to the status of a science, for several reasons:
If you want to study the behavior of rats or pigeons, there are no significant ethical limitations – you can kill them, you can cut them up, you can dress them out in EEG probes while they play violent video games, no one will complain. They are expendable, they are animals.
But as to the study of human beings, there are severe limitations on what kinds of studies are permitted. As an example, if you want to know whether removing specific brain tissue results in specific behavioral changes, you cannot perform the study on humans. You have to perform it on animals and try to extrapolate the result to humans.
One of the common work-arounds to this ethical problem is to perform what are called “retrospective studies,” studies that try to draw conclusions from past events rather than setting up a formal laboratory experiment with strict experimental protocols and a control group. If you simply gather information about people who have had a certain kind of past experience, you are freed from the ethical constraint that prevents you from exposing experimental subjects to that experience in the present.
But, because of intrinsic problems, retrospective studies produce very poor evidence and science. For example, a hypothetical retrospective study meant to discover whether vitamin X makes people more intelligent may only “discover” that the people who took the vitamin were those intelligent enough to take it in the first place. In general, retrospective studies cannot reliably distinguish between causes and effects, and any conclusions drawn from them are suspect.
Think about this for a moment. In order for human psychology to be placed on a scientific footing, it would have to conduct strictly controlled experiments on humans, in some cases denying treatments or nutritional elements deemed essential to health (in order to have a control group), and the researchers would not be able to tell the subjects whether or not they were receiving proper care (in order not to bias the result). This is obviously unethical behavior, and it is a key reason why human psychology is not a science.
. . .
This raises another ethical issue, that of informed consent. Has the client been properly informed as to the nature of the procedures — will the sessions consist of research, diagnosis, therapy, or some mixture? But there is no remedy for this problem, because the clinician can’t tell the client what is going to happen, because he doesn’t know, and he is certainly not going to resist publishing any interesting, unforeseen results as research findings.
Overall lax standards.
The items listed above inevitably create an atmosphere in which absolutely anything goes (at least temporarily), judgments about efficacy are utterly subjective, and as a result, the field of psychology perpetually splinters into cults and fads (examples below). “Studies” are regularly published that would never pass muster with a self-respecting peer review committee from some less soft branch of science.
RE: HARVESTING A POOR, LONG-DECEASED BLACK WOMAN”S CELLS, and blood from her relatives, and PROFITING FROM IT:
In a far earlier post, I’d put up “A Woman’s Undying Gift to Science” about how cells were harvested and used for research: Henrietta Lack:
Books of The TimesPublished: February 2, 2010
(review) by Dwight Garner.
The woman who provides this book its title, Henrietta Lacks, was a poor and largely illiterate Virginia tobacco farmer, the great-great-granddaughter of slaves. Born in 1920, she died from an aggressive cervical cancer at 31, leaving behind five children. No obituaries of Mrs. Lacks appeared in newspapers. She was buried in an unmarked grave.
To scientists, however, Henrietta Lacks almost immediately became known simply as HeLa (pronounced hee-lah), from the first two letters of her first and last names. Cells from Mrs. Lacks’s cancerous cervix, taken without her knowledge, were the first to grow in culture, becoming “immortal” and changing the face of modern medicine. There are, Ms. Skloot writes, “trillions more of her cells growing in laboratories now than there ever were in her body.” Laid end to end, the world’s HeLa cells would today wrap around the earth three times.
Because HeLa cells reproduced with what the author calls a “mythological intensity,” they could be used in test after test. “They helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization,” Ms. Skloot writes. HeLa cells were used to learn how nuclear bombs affect humans, and to study herpes, leukemia, Parkinson’s disease and AIDS. They were sent up in the first space missions, to see what becomes of human cells in zero gravity.
Bought and sold and shipped around the world for decades, HeLa cells are famous to science students everywhere. But little has been known, until now, about the unwitting donor of these cells. Mrs. Lacks’s own family did not know that her cells had become famous (and that people had grown wealthy from marketing them) until more than two decades after her death, after scientists had begun to take blood from her surviving family members, without their informed consent, in order to better study HeLa.
Ms Skloot, who wrote the book:
Ms. (had she lived at the time “Ms.” was used) Lack & (husband) David:
U.S. Congresswoman Carolyn B. Maloney, New York to Speak at HERS 2010 Hysterectomy Conference
Now here’s one on the over-use of Hysterectomy — and upcoming conference (NY) from the HERS FOUNDATION on the inappropriate cutting on women, and taking personal CHUNKS of them out unnecessarily, and without INFORMED CONSENT on the aftereffect and consequences. This has now happened (not this exactly, but the process) in 3 generations of females in my line, myself being the middle one. I can’t speak about any potential others because I don’t know my forebears that well, but I know that one of them was getting whanged on by her husband while attempting to raise children.
I am going to paste the particulars, because a number of parallels between showing up for medical help, and showing up for the courts exist; two of the attorneys showing up here have dealt with that, as in, class actions. Place information is at the link above.
Saturday, April 24, 2010
8:30 – 9:30 a.m. Registration 9:00 – 9:10 a.m. Welcome 9:10 – 9:40 a.m. Keynote Speaker
U.S. Congresswoman Carolyn B. Maloney, New York
Chair of House-Senate Joint Economic CommitteeMaloney has been a powerful advocate for women’s rights since before her first election to the House in 1992, dubbed the “Year of the Woman” for the number of females elected to Congress. Closely allied with groups like Emily’s List and the National Organization for Women, she has taken an active role in pushing for passage of virtually every major piece of women’s rights legislation.In 2008, Maloney published “Rumors of Our Progress Have Been Greatly Exaggerated,” a book detailing the ongoing struggle for women on a number of fronts, including equal pay, healthcare and politics.
9:40 – 10:00 a.m. The Medicalization of Women
Sybil Shainwald, JD
The Law Offices of Sybil ShainwaldShainwald is dedicated to advocating for safe and effective healthcare for women. She pioneered DES litigation and was co-counsel in Bichler v. Lilly, the nation’s first DES Daughter legal victory in 1979. She proved that DES-exposed individuals had been harmed after the pharmaceutical industry failed to test the safety of DES, and continually promoted the drug even after it was known to be a carcinogen and absolutely ineffective.
10:00 – 10:30 a.m. The Female PelvisMitchell Levine, MD
Tufts and Harvard Schools of MedicineWhat the pelvis looks like when the uterus and ovaries are removed, and what fills the empty space. What happens when the blood supply, nerves and ligaments attached to the uterus are severed.
10:30 – 10:45 a.m. Break 10:45 – 12:00 p.m. The Voices of ExperienceModerator
Nora W. Coffey
President, HERS FoundationPanel
Nicole Choate, RN
Tawanda QueenWomen describe what they were told before and after hysterectomy. They discuss the impact of the surgery on every aspect of their lives.
12:00 – 1:30 p.m. Lunch 1:30 – 2:00 p.m. Your Vote is Mightier than the Lobbyist’s DollarIndiana Representative Bruce Borders
Member of Insurance CommitteeThe legislative process, and what you can do to help pass a Hysterectomy Video Informed Consent Law.
2:30 – 3:30 p.m. Common Conditions, Treatment Options, and Consequences of HysterectomyMitchell Levine, M.D.
Tufts and Harvard Schools of MedicineAlternatives to hysterectomy for common symptoms and conditions, including ovarian cysts, fibroids, endometriosis, hyperplasia, prolapse, HPV, pelvic pain and obstetric hemorrhage.
3:30 – 3:50 p.m. Proud Flesh: A Hysterectomy JournalGenevieve Carminati, M.A.
Associate Professor of English
Coordinator, Women’s Studies
Montgomery CollegeReading from the journal she began shortly after she underwent a hysterectomy at the age of 25.
3:50 – 4:00 p.m. Break 4:00 – 5:00 p.m. Medical Malpractice: The Legal and Medical IssuesRobert E. Myers, J.D., L.L.M.
Senior Trial Attorney
The law firm of Coffey Kaye Myers and Olleyhttp://www.felaattys.com/protect-your-rights.php(When Injury Strikes)….
What constitutes medical malpractice, what to ask a lawyer, and what you should expect from your lawyer. An expert in medical malpractice, Myers will discuss the basic elements for pursuing a claim and establishing damages.
5:00 – 6:00pm Round Table DiscussionSpeakers and AttendeesBruce Borders
Nora W. Coffey
Carolyn B. Maloney
Robert E. Myers
Sybil Shainwaldh ttp://www.sybilshainwald.com/The primary thrust of Sybil Shainwald’s practice has been, and continues to be, women’s health law. Ms. Shainwald pioneered Diethylstilbestrol (DES) litigation. She was co-counsel in the nation’s first “DES daughter” case, Bichler v. Lilly. Since that time, she has represented thousands of women and men, from around the country and worldwide, who were exposed to DES. She has been given numerous awards for her work, including an award by the DES Cancer Network.Throughout her years of practice, Ms. Shainwald has litigated cases involving drugs and medical devices that have inflicted harm on women and their offspring. She was a member of the national Plaintiff’s Negotiating Committee for the court-appointed Plaintiff’s Steering Committee in the silicone breast implant litigation. She was also named as the Chair for the Foreign Plaintiff’s Subcommittee representing all the interests of foreign women.Not only has Ms. Shainwald been an avid litigator of women’s health issues, but she has been active in numerous women’s health organizations as well. She has also appeared on every major TV network, written, testified and lectured extensively on obstetrical malpractice, IUDs, unnecessary hysterectomies, hormone therapy, and products liability litigation
NOT TO MENTION;
Reviewed thus in 2007:
Seaman is a science journalist and cofounder of the National Women’s Health Network. She takes on the drug industry in this book, condemning the common use of hormone replacement therapy, especially estrogen. She has studied women’s health both during fertile years and post menopausal. Physicians prescribe hormone replacement therapy for many women’s health purposes, from birth control to menopausal ailments. Seaman believes that hormone replacement therapy is over prescribed and dangerous. The Greatest Experiment Ever Performed on Women examines how the drugs have been used since their beginnings back in the 1940’s and 1950’s. She talks about the different cancers that the drug has been known to cause and others that the medical field won’t admit but she believes has caused. Seaman gives a good history of female medicine going back hundreds of years to different herbal remedies that have been used for menopause.
Seaman doesn’t call for estrogen and other hormone replacement drugs to be banned, although it’s close in this book. Instead she advocates using them sparingly and at the lowest doses possible. Over the past 50 years the dosages keep lowering as problems start appearing. Yet this is the type of drug that has very long term effects not only on women’s bodies, but the sexuality of both sexes. She scathingly reduces the medical field to a “men’s only” club that pat the little woman on the head, tell her that they know best, and send the female patient out with a medication that could cause death.
I’m not saying that men, too, or girls & boys, are not “experimented” on, improperly, and often for frightenly racist, if not “eugenic” reasons. This is an INSTITUTIONAL issue, as well as an ATTITUDINAL. Some of this is frightening to consider:
As of just about a full year ago (April 19, 2009):
Gov. Charlie Crist has ordered the Florida Department of Law Enforcement to investigate 31 graves near the school. “Please determine whether any crimes were committed and, if possible, the perpetrators of these crimes,’’ Crist wrote.
For their own good: a St. Petersburg Times special report on child abuse at the Florida School for Boys
. . .
They remember walking into the dark little building on the campus of the Florida School for Boys, in bare feet and white pajamas, afraid they’d never walk out.
For 109 years, this is where Florida has sent bad boys. Boys have been sent here for rape or assault, yes, but also for skipping school or smoking cigarettes or running hard from broken homes. Some were tough, some confused and afraid; all were treading through their formative years in the custody of the state. They were as young as 5, as old as 20, and they needed to be reformed.
It was for their own good.
Someone is always needing to be taught a lesson, apparently, if not medicated for failing to comply with social norms.
Using Psychology to discredit normal human reactions to extreme circumstances aint’ exactly new, and sometimes simply approaches, not ‘therapeutic jurisprudence,” but basic namecalling….
by Phyllis Chesler
Palgrave Macmillan, 2005
Review by Tony O’Brien, M Phil on May 31st 2006Women and Madness is the reissued, revised edition of a book first published at the height of second wave feminism in 1972. The Female Eunuch (Germaine Greer), and Sexual Politics (Kate Millet) were published in 1970. Chesler’s book has a more specific focus than the other two; it is concerned with ‘madness’, or perhaps more correctly the social construction of madness in western patriarchal societies.. . .
Women and Madness was written at the time of the DSM II, a diagnostic system that was used to support the sorts of subjective value judgments Chesler rightly complains of. How ironic then, that the use of the more objective criteria of the DSM IV makes little difference to the gendered distribution of mental illness. It will come as no surprise to Chesler to see that despite the influence of political arguments such as those of Women and Madness, change has been limited. Public health literature is depressingly consistent in showing that despite increased knowledge of risk factors, it is still the poor and the oppressed who experience the worst health outcomes. Chesler is under no illusions that the struggle she articulated three decades ago continues.
Women and Madness is a revolutionary book.
While He Saids and She Saids still abound, and the hate flows around, the new/old theme is basically that protest – or conflict — or disagreements — are now a “sickness” to be fixed.
Enter the Family Law System, in one of its primary organization’s own words. . . . . With a lot of help from the Fatherhood and Healthy Marriage funders…. We need to FIX people!!! No longer is it “what happened in re: law” but whoever protests the loudest is the bad guy. The pendulum has swung from “irreconciliable differences” (some of them very legitimate) to the 20th/21st century version of “Arbeit Macht Frei,” (although I do NOT mean to diminish the comparision, only refer to the principle of establishing agencies to force reconciliation “for the sake of the kids).
The principle is to look at the “fixers” and the guardians of what is “correct” acceptable social behavior… In this case, it is the social science (with heavy religious overtones in many cases) superstructure of foundations & grants to nonprofits (and “principal investigators” – sounds like an experiment to me, or research, right? On PEOPLE …)
that is driving the court system in the ditch (or, rather has) and made a mockery of its purpose, methods, and end goals, which used to include the concept of “Justice” and a bit of fair play…
Next June (maybe catch it after the HERSFOUNDATION one on informed consent about hysterectomy)
CHANGING THE CONCEPT, FIXING MARRIAGES, the JUDGE AS THERAPIST (or Dispensary);
In 1975, Review Editor Meyer Elkin editorialized on the language of family law:
Why do we continue to use the language of criminal law in family law? Is it primarily tradition that causes us to continue to use the old words in family law? Or is it something else? Is it a reflection of the prevailing ambivalence of this society which, on the one hand, tells people that divorce is okay, but by its actions, or lack of it, shows that many still do not accept the idea of divorce in a pair-oriented society? We need to develop new words that will alleviate stress on the divorcing family rather than add to stresses already present….Family law is entering a new period. There is now present an opportunity for introducing new practices and procedures—and words that will represent the combined expertise of both law and the behavioral sciences who, after all, are equally concerned and have similar goals regarding the strengthening of the family. Lets us now start the search for the words.
AFCC members and courts continued to lead the way in developing new services throughout the 1970s. In 1973, the Los Angeles Conciliation Court began a pilot program to mediate custody and visitation disputes. Divorce education workshops for parents began to emerge in several AFCC member courts.
…The dilemma that fathers have in this venue, is that it’s a powerful tool WHEN the cookie crumbles in the right (towards them, if a batterer or abuser, or simply uninterested in that Child Support Thang…) direction. Then the cries are loud and doleful about violation of constitutional rights (particularly among religious groups not particularly friendly to the concept of WOMEN as HUMANs….). It’s a tough choice — play victim? Or go with the flow?
Could you have it much clearer? For sure, it’s a combo of behavioral science AND law.
Let’s see if a site promising women help with protection against violence is actually going to SAY that up front that mediation, for example, is inadvisable when there is domestic violence issue, BUT that to have a “required outcome” of more noncustodial parent time (to get them female-headed households off welfare, and provide nonpaying parents an incentive — not of course, to continue endless litigations til someone ‘breaks,” but to man-up and support their offspring), and moreover, they’re mandatory, too, and funded by a huge ($10 mil/year/nationwide) federally funded program called “Access/Visitation,” and so forth…
It says: “JUSTICE IS NOT SERVED TIL VICTIMS ARE.”
(in a nice logo) and has a nice executive director, with background in — Sociology, and passing the bar in 1997.
She is currently the Executive Director of the Alameda County Family Justice Center, a one-stop service delivery center comprised of multiple public, non-profit, and government agencies with the single mission of providing easily accessible, coordinated, and culturally sensitive services to victims of domestic violence, child abuse, elder abuse and sexual assault and exploitation.
The Alameda County Family Justice Center (ACFJC), under the leadership of Executive Director Nadia Davis-Lockyer, Esq., is a new community initiative launched by more than 50 organizations and 150 people who have joined together to provide comprehensive services required by domestic violence victims and their families.
Her 2003 marriage to Lockyer –30 years her senior – came as a shock to political watchers statewide. They had, according to an April 19, 2003 Los Angeles Times story, been dating for a year when they got married that spring. In fact, she was already pregnant when they took their wedding vows.
At least one of her supporters believes her age is an advantage. “It’s great to have the participation of a relatively young person who can better understand what students are going through,” John Hanna, a Rancho Santiago Community College District trustee who has worked with Davis-Lockyer on education issues for years, said. “The Board of Governors is typically drawn from an older population that’s not a reflection of the student body.”
Then again, all this may be academic. Stern said he believed that the “doctrine of incompatible offices” would kick in if Davis-Lockyer gets elected to the Alameda County Board of Supervisors, forcing her to give up her Community Colleges Board seat. When asked if this was true, Paige Marlatt Dorr, a spokeswoman for California Community Colleges Chancellor Scott, said her office’s legal advisers weren’t sure and would ask the state Attorney General’s office for a legal opinion should Davis-Lockyer win the election.
A call to the AG’s office asking whether the incompatible offices doctrine was relevant to Davis-Lockyer’s case was also not conclusive. “That question would require legal analysis, which we are not able to provide to the public,” Christine Gasparac, press secretary to Attorney General Jerry Brown, e-mailed on Feb. 2. Gasparac added that I was free to refer to the AG’s 204-page Conflict of Interest pamphlet. Chapter 11, which deals with incompatible offices, seems to indicate that Stern is correct.
“The doctrine of incompatible offices concerns a potential clash of two public offices held by a single official,” states the pamphlet. “When a person holds offices with two governmental entities and there is overlapping geographical and subject matter jurisdiction the offices generally are incompatible.” The pamphlet then lists a dozen examples, the first of which is “county board of supervisors member and community college board member.”
Well, that’s all for today. …