What do you think? Is queer bioethics a new academic discipline? If so, is it one we can hope not to need at some point in the future as tolerance increases, etc.?
Category: Bioethics
More on Conscience and Civil Disobedience
Over at The Hastings Center’s Bioethics Forum blog, there’s an interesting post from Rosana Triviño addressing the difference between conscientious refusal and civil disobedience, in relation to Spain’s new law limiting care for undocumented immigrants. This links nicely to some conversation we’ve been having here at Bill of Health as to whether conscientious refusals and actions ought to be thought of similarly and granted similar protections.
One thing I’m puzzling over is the relevance (or not) of institutional support for the conscientious behavior in question. So in Spain, several medical organizations have encouraged physicians to avoid withdrawing care from undocumented immigrants, and of course in the US and elsewhere, there are many groups that encourage physicians not to perform abortions and other controversial services. Does institutional involvement make something look more like civil disobedience? I think the answer is “kind of.”
Ultimately, something is clearly civil disobedience when refusers or actors – 1 or 100 or 1000 – violate the law on the books for conscientious reasons. But where numbers or institutions can matter is when refusers refuse on grounds of conscience to do something that is legal but not required. Their refusals are not violating the law, individually or collectively, and there is no technical disobedience. But when there are enough refusals to do what the law allows, the law may as well say something different. And particularly when those refusals are coordinated in some way to prevent access to what the law allows, things start to look a lot more like civil disobedience. So conscientious violation of law seems to be sufficient but not necessary for civil disobedience, which on a broad view could also include efforts to sabotage or impede a law through collective inaction.
What do you think?
To Tell or Not to Tell: Should Researchers Contact Anonymous Donors to Help Them?
By Cansu Canca
A recent New York Times article drew attention to an issue with increasing importance as technology develops. Gene samples collected under conditions of anonymity reveal more and more information that may be of crucial importance for the subjects or their relatives. Researchers feel a moral obligation to disclose these important findings, which may even be life-saving, to the subjects. Yet, the anonymity clause in the consent forms prevents them from doing so.
Whether or not researchers can or must disclose the information in spite of the anonymity clause mainly turns on two issues: the scope of the informed consent and the reach of the obligation for beneficence.
Call for Applications – Yale Summer Institute in Bioethics
Announcing Yale University Summer Institute in Bioethics
June 3-July 26, 2013
New Haven, Connecticut
Yale’s Interdisciplinary Center for Bioethics hosts an intensive Summer Institute for U.S. and international participants. The Institute is an 8-week immersion consisting of lectures, seminars, and research exploring bioethical concerns relating to medicine, law, religion, public health, animal rights, and the environment.
Application deadline for U.S. applicants: January 15, 2013, International students encouraged to apply by November 30.
Tuition is $1,400 (undergraduates), $2,000 (law students, medical students, other graduate students and post-doctoral fellows), $3,000 (professionals). Housing is available within walking distance for an additional cost. Course credit is available.
For further information, please see www.yale.edu/bioethics/summer/shtml or contact Carol Pollard at carol.pollard@yale.edu or (203) 432-6188
Upcoming Event – The Valuation of Life and Health in Government Policies
Wednesday, September 19, 2012
4:10-6:00pm
Harvard Kennedy School
Belfer Center, Room 1
Jonathan Wolff will be discussing the valuation of life and health in government policies. Free and open to the public. Stop by if you’re in Cambridge!
(And don’t forget about Michael Sandel’s talk, “What Money Can’t Buy: The Moral Limits of Markets” – which is unfortunately at a conflicting time at the law school. Take your pick!)
New article on managing inherent conflicts in human subjects research
“In Plain Sight: A Solution to a Fundamental Challenge in Human Research”
Journal of Law, Medicine, and Ethics, Forthcoming (Lois Shepard and Margaret Foster Riley, UVA)
From the abstract: The conflict of interest created when physician-researchers combine medical research and treatment is a long-standing and widely recognized ethical challenge of clinical research that has thus far eluded satisfactory solution. A researcher’s obligation to the scientific enterprise not only provides the temptation to ignore the medical needs of subjects in a study, it may provide an obligation, short of actually endangering subjects, to override their medical needs or preferences. Expecting research subjects to protect themselves through informed consent processes is unrealistic, as is expecting physician-researchers to internally navigate this conflict simply by being virtuous. The problem is a structural one that requires a structural solution. People who are receiving medical treatment need a doctor devoted to their care to provide the independent, individualized judgment and advice expected of a physician outside of research. Reliance on other, existing protective mechanisms — institutional review boards, data safety monitoring boards, medical monitors or even the new research subject advocacy programs — falls short, as indeed each of those mechanisms assumes that the subject will be protected and advised by the local investigators, a role they cannot fulfill. For these reasons, we propose that in much clinical research, each research subject should have a doctor independent from the research study.
Treatment of Subject Injury: Fair is Fair
By Suzanne M. Rivera, Ph.D.
Of all the protections provided in the Common Rule to safeguard the rights and welfare of research participants, there’s one glaring omission: treatment of study-related injuries.
Our current regulatory apparatus is silent on whether treatment of injuries incurred while participating in a study ought to be the responsibility of the sponsor, the researcher, or the test subjects. The closest thing to guidance we are given on this topic in the Common Rule is a requirement that, if the study involves more than minimal risk, the informed consent document must provide, “an explanation as to whether any compensation and an explanation as to whether any medical treatments are available if injury occurs and, if so, what they consist of, or where further information may be obtained.”
Note, the regulations do not state that plans must be made to provide treatment at no cost to the participants. In fact, the regulations don’t say treatment needs to be made available at all. Thus, it is possible to comply with the letter and spirit of the regulations by stating the following in an informed consent document, “There are no plans to provide treatment if you should be injured or become ill as a result of your participation in this study.” Or even, “The costs of any treatment of an injury or illness resulting from your participation in this study will be your responsibility.” Read More
Conscientious Actions and Refusals
Great new Perspectives piece by Lisa Harris out in NEJM on the need to recognize that conscience can compel action, not only refusals to provide certain types of care (including abortion). Elizabeth Sepper makes a similar argument in her forthcoming article in the Virginia Law Review.
First, let me just say that I couldn’t agree more – it is essential to recognize both sides of the coin. As I’ve argued elsewhere, both ought to be respected and protected, to a point, but the issues raised by conscientious refusal versus conscientious action are distinct in some important ways. The primary problem with refusals is that they can burden patients by creating barriers to care, if not managed appropriately. On the other hand, conscientious action would make care available to patients – and what could be wrong with that?
California Surrogacy Bill Reacts to Lawyer Bad Acts
[posted on behalf of Judy Daar]
Mishaps in assisted reproductive technologies (ART) breed public outcries and legislative hand-wringing. It is no wonder a 2011 San Diego-based ART debacle dubbed “an international baby-selling ring” caught the attention of the California legislature. In a state where elected officials practically swear fealty to the mantra, “there ought to be a law,” the conviction and imprisonment of a prominent attorney who ran a gestational surrogacy agency gone awry was bound to garner lawmaker attention. The resulting sausage, A.B. 1217, passed legislative muster last week and now awaits signature or veto by Governor Brown.
The story of A.B. 1217 is far more elaborate than the typical sequence of mishap to measure that often accompanies ART blunders. In California alone, our codes are peppered with laws reacting to all manner of ART black eyes, including the egg-swapping scandal at the UCI Center for Reproductive Health in the mid-1990s, the luring of egg donors by big money pay outs and the criminal mishandling of trust funds supplied by intended parents in surrogacy arrangements. Overwhelmingly, these laws are dormant but their enactment expressed the public’s outrage when third parties manipulated and mishandle the birth of an assisted conception child.
A.B. 1217 is likewise designed to forestall a perceived evil – the selling of ART offspring, a noble enough cause. But the bill began its legislative life in February 2011 as a behemoth “kitchen sink” overhaul of ART law in the Golden State. The 34-page bill regulated all manner of assisted reproduction, sometimes for the better (defining “infertility” for purposes of state mandated health insurance as “the desire to achieve pregnancy by means other than sexual intercourse” – thus, growing the coverage pot for single and same-sex parents), and sometimes for the worse (requiring anyone using ART to undergo a mental health consultation – implying that infertility itself is a psychological impairment and burdening couples who just need a little help reproducing using their own gametes with an intrusion not visited upon those able to reproduce naturally).
Is the Self Defense Exception Consistent with the Belief that a Fetus is a Person?
In Glenn Cohen’s first post on this blog, he questioned whether Mitt Romney’s position on abortion was coherent with respect to the rape and incest exception, but did not question the self-defense exception itself. He addressed the self-defense exception briefly: “Through the well-known doctrine of self-defense, the criminal law has long recognized that an individual may be justified in killing to protect his or her own life, or possibly health, and these exceptions merely reflect a similar view as to fetuses.” He is correct to say that this is the established position, one that dates at least as far back as the Talmud. But, assuming one believes that the fetus is a person entitled to the full panoply of rights, is the self-defense exception defensible?
Lethal self-defense is generally legally justified when used to protect your life. This is even true in cases where the attacker is not morally culpable. Judith Jarvis Thompson, in her article entitled “Self Defense,” argues that this is true because they will “otherwise violate your rights that they not kill you.” She then extends the rights of self-defense to third parties arguing that the rights are not personal (agent-relative).
Additionally, in the article “A Defense of Abortion,” Judith Jarvis Thompson argues forcefully against the position that abortion should be impermissible even when the mother’s life is at risk. This position is untenable from the perspective of the mother because “[i]t cannot seriously be said that . . . that she must sit passively by and wait for her death.” In the abortion case, it follows that a third party (doctor) has the right to save the mother’s life as well. I find this to be a convincing argument against the position that abortion should never be allowed. But does it establish that every time the health of the mother is at risk she has the right to abort the fetus, killing a person?