The 17th Annual American Society for Bioethics and Humanities Meeting was held October 22-25, 2015, in Houston, TX. Center faculty Tom Tomlinson, Len Fleck, Libby Bogdan-Lovis, Karen Kelly-Blake, and Devan Stahl presented and participated in panel discussions during the conference.

Tom Tomlinson, PhD
Director, Center for Ethics and Humanities in the Life Sciences
At ASBH I had the pleasure of making two presentations early Sunday morning. The first was “Is There a Right Not to Know?” In it I argued (with help from Devan Stahl) that despite presumptions to the contrary, patients with advanced terminal illness do not have a right to refuse information about their prognosis. Among other reasons, such a right pales by comparison to the right that is sacrificed: the right to make end of life decisions about their treatment that best preserves their values and goals. The second was “The Moral Concerns of Biobank Donors: The Effect of Non-Welfare Interests on Willingness to Donate.” In this talk I presented the results of a national survey conducted with colleagues at the University of Michigan. We argued that the survey results demonstrate that the ways in which donated, de-identified, biological specimens and data are later used matter to people’s willingness to give a “blanket consent” to any future research done with their donation. We argue that biobanks should take these concerns into account in the design of their consent process, in their public information policies, and in their review of proposed research studies.

Len Fleck, PhD
Professor, Center for Ethics and Humanities in the Life Sciences
I presented Sunday morning at ASBH. The title of my presentation was “Precision Medicine/ Ethical Ambiguity?” My focus was on precision medicine as it pertained to cancer care. One often hears of cancers being identified by their “genetic signature,” or the genetic features of a cancer that drive the growth of that cancer. The goal of precision medicine is to design “targeted therapies” that match (and defeat) that genetic driver. Unfortunately, it turns out that most cancers have multiple “potential” drivers, some of which become actual drivers after a targeted cancer drug has contained the first driver. I pointed out that a major ethical problem (a matter of health care justice) is that these cancer drugs have costs of $100,000 or more for a course of treatment and generally yield on average extra weeks to extra months of life. I raised three critical questions: How many of these drugs does any one patient have a just claim to, if used in succession to defeat each emerging driver of that cancer? Keep in mind that about 600,000 individuals die of cancer each year in the US. Do all of them have a just claim to several of these targeted therapies at $100,000 each? Alternatively, a small percentage (maybe 5%) of cancer patients are “super responders” who might gain several extra years of life from having access to one or another of these, perhaps at a cost of $100,000 for each year of life gained. Should they alone have a just claim to these drugs because society is gaining so much more for the social investment? Or should access to these drugs be determined entirely on the basis of an individual’s ability to pay for these drugs (thereby sparing society the need to make explicit and painful rationing decisions)? I concluded that addressing these questions will require thoughtful and respectful democratic deliberation, not simple individual choices.

Karen Kelly Blake, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences
In concert with research collaborators Libby Bogdan-Lovis (Assistant Director, Center for Ethics and Humanities in the Life Sciences), Nanibaa’ Garrison, (Seattle Children’s Hospital) and Faith Fletcher (University of Illinois Chicago), I presented “Identity Complexities: Unpacking Concordance in the Medical Workforce.” Our team reported preliminary results of a 2000-2015 scoping literature review to examine presumed benefits of matching URM physicians with patients sharing similar race/ethnic identities. Our project is supported by contributions of research assistants Brittany Ajegba (MSU CHM medical student), Nichole Smith (Vanderbilt premedical undergraduate), and Jessica Torres (University of Illinois Chicago MPH student). We found that of 139 abstracts meeting our inclusion criteria, medical workforce diversity is mentioned the most among variables. Patient outcomes are mentioned the least. Blacks are mentioned more frequently across primary variables. American Indian/Alaskan Native/Native American is mentioned least frequently across variables. Our next phase will be the content analysis of the 139 included articles.

Devan Stahl, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences
I was on a panel with Drs. John Kilner and Jeffrey Bishop responding to Dr. Kilner’s book, Dignity and Destiny: Humanity in the Image of God, for the Bioethics and Christian Theology Affinity Group. Dr. Kilner’s book focuses on the how the image of God grants all humans inherent dignity which cannot be damaged or lost as a result of sin. The respondents then discussed the potential implications this theological anthropology has for bioethics. My response highlighted the need for a reimagining of the theological concept of dignity for persons with profound intellectual disabilities. I argued that although the concept of dignity cannot easily solve the complex issued involved in clinical ethics, it can reframe our interactions with persons with profound disabilities, whose humanity is often questioned in both theology and bioethics. By not basing our concept of dignity on any inherent capacity for intellect, righteousness, equality in relationship, etc., we allow room for those who do not have these capacities to maintain their status as bearers of God’s image and, therefore, claim them as persons worthy of respect and care. Ultimately, I argued that we ought to imagine friendship as the ultimate telos or destiny of human life. When friendship is our goal, our ethical priority is not to ‘fix” or cure what we find broken or defective in others, but to befriend persons so that they too can participate in the good life.