Wednesday, June 23, 2010

Research Ethics: Aversion Therapy at BYU

By Mister Curie

The conduct of Human Subjects Research is largely directed by common sense principles of respect for fellow human beings.  These principles were first codified in 1946 in response to the medical research atrocities of the Nazi Regime and are known as the Nuremberg Code.  This code first vocalized the need for voluntary consent and that the benefits must outweigh the risks.  In 1964, the World Medical Association gave recommendations for human subjects research known as the Declaration of Helsinki, which added the declaration that research participants must not only be voluntary, but that they must also have informed consent.

These common sense principles were referred to in Quiet Song's comment on yesterday's post, saying: "And just how did said student find his subjects? Were they shanghaied in the then student union, hung by their ankles, or forced to give up their diplomas if they did not participate in Dr. Defacto's research? (voluntary consent) Lied to? (informed consent) Secretly sterilized? (benefits outweigh risks) Given no disclosure that they were research subjects? (informed consent)"

What is the evidence that these principles were adhered to in the performance of aversion therapy research at BYU in the mid-60's and 70's?

(1) Voluntary Consent - BYU students suspected of being homosexual were interviewed and the extent of their homosexual behavior determined.  If the student was allowed to remain a BYU student on probation, the student was required to undergo therapy (not all of this therapy was aversion therapy, but the required therapy sometimes progressed to aversion therapy).  Therapy in general was clearly not voluntary, as it was required to remain a student.  In addition, BYU students suspected of being homosexual were identified through a variety of methods, including confessions of other homosexuals, spies, identifying cars at known gay hang-outs, etc.  I am unable to determine if the aversion therapy was on a voluntary basis in addition to other therapeutic modalities, but given the means used to identify homosexuals and the requirement of therapy to remain a BYU student, as well as the psychological weight of expert opinion from the therapists, I presume that participation was not entirely voluntary.  Furthermore, prophetic pronouncements on the evils of homosexuality and perceived involuntary "outing" to family and friends as a result of expulsion are likely to create an atmosphere where true voluntary consent would be rare.

(2)  Informed Consent - All participants signed a statement of consent to the aversion therapy (at least in the McBride study for his PhD dissertation).  Participants were informed that the therapy was experimental in nature, would produce a "great deal of discomfort" with potential "tissue or organ" damage, and would involve materials that could be construed as "socially or morally offensive" (pornography).  However, is this truly informed consent?  One of the well-documented deficiencies in many consent processes is when participants mistake a research study for a therapeutic intervention.  Given that aversion therapy was recommended in the process of therapy for homosexuality as a prerequisite to continued education at BYU, it is highly likely that students perceived the study as therapy and not research.  How well does the consent document distinguish this study (part of a research PhD dissertation) as a research study and not as a therapy?  While the document does call the therapy "experimental", the title of the consent document refers to the therapy sessions as  "treatment procedures" and the document refers to "therapeutic objectives" and the therapy as a "treatment".  Based on the consent language and the propensity for research participants to mistake research trials as therapeutic trials, it is highly likely that participants felt they were receiving experimental therapy and not involved in a research protocol.  One wonders if the scientists also forgot that they were performing experimental research and not provided therapy.  The consent should have clarified that this is a research study without known clinical benefit and that participation was primarily for research and primary goals were to further scientific knowledge and not for therapeutic improvement with any therapeutic improvement being secondary.

3) Benefits outweigh risks - Here potential benefits are hard to quantify as faithful Latter-day Saints would likely view the potential benefit from the procedure (conversion to heterosexuality) as nearly unquantifiable as adherence to the commandment to marry and have kids would enable the new heterosexual to obtain Godhood and worlds without number, justifying nearly any level of risk.  A more modest assessment of the benefits being a slight decrease in homosexual attraction hardly justifies the physical and psychological damage induced by the therapy.  Care should have been taken to ensure that no lasting physical damage was inflicted, particularly in light of unproven benefit.

In this assessment I do not wish to convey the impression that BYU was alone in the 60's and 70's in failing to adhere to published human subjects research guidelines and common sense principles.  And certainly some of the more extreme experimental treatments of homosexuality, such as chemical castration and experimental brain surgery, were not performed at BYU.  However, for a church that claims exclusive revelation and prophetic insight into God's will, I would have hoped that it would not follow the trends of secular research, particularly when such research ultimately fails to produce the desired results.  The BYU aversion therapy experiments are simply further evidence that the church's policies toward homosexuality are inconsistent over time, are not divorced from prevailing public opinion (at least among conservative religious thought), and fail to engender confidence that current church policies mirror God's will and will not change in the future.  Furthermore, there is a disturbing departure from eternal principles with the introduction of pornography into therapy, suggesting ethical schizophrenia.

4 comments:

  1. It's kind of depressing that I'm not surprised by BYU's participation in this kind of unethical behavior.

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  2. Excellent analysis. Brings back memories of that common-sensical IRB training a while back. Have any of these subjects come forth and provided first-hand accounts?

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  3. @EL - such behavior in the 60's and 70's is hardly unique to BYU, but that does not make it right

    @GMB - I don't know how many times I've had to go through HIPAA/IRB/Human Subjects Research/Research Ethics trainings. Perhaps the biggest thing that hit me was that this was clearly "research" and not "therapy", but the subjects certainly thought they were receiving therapy. There is a compilation of several first-hand accounts at the link I provided on the previous post.

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  4. It's a sad commentary when moral lapses by the church or its affiliates are condoned because "everyone is doing it." e.g. Mormon racism or the example you cite. Shouldn't we be living a higher standard?

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