The 16th Annual American Society for Bioethics and Humanities Meeting was held October 16-19, 2014, in San Diego, CA. Three Center faculty members attended and presented on various topics.
Tom Tomlinson, PhD
Along with John Lizza, Robert Truog, and Don Marquis, I was on a panel entitled “Donation Following Cardiac Death: Does It Matter Whether Donors Are Really, Most Sincerely Dead?” The discussion focused on when it was legitimate to say that these donors had “irreversibly” lost circulatory and respiratory function, so that they could be declared dead prior to organ retrieval. My panel presentation was titled “Irreversibility is a Relational Property.”
I presented a paper titled “The Case for Veterinary Bioethics”; this was part of a paper session on Animal Ethics. My presentation focused on examining the ethical frameworks used in veterinary medicine, and identifying gaps in these frameworks that may signal a need to expand them. I proposed that these broadened frameworks can be conceptualized as “veterinary bioethics.” Despite the fact that animal ethics has never been a very prominent track at ASBH conferences, the session was well attended. I received several interesting questions from the audience; one of those questions was whether or not a veterinary bioethics framework would contribute anything new to medical bioethics. I thought this was a great question that our work at the Center might help answer, since our faculty teach in the Medical Colleges as well as the Veterinary College. Building on the feedback and comments I received, I hope to further develop this project for future publication.
Leonard Fleck, PhD
I did a presentation titled “Whole Genome Sequencing: The Devil in the DNA.” The basic argument was this: Whole Genome Sequencing [WGS] is very promising from a medical point of view. It can be used to identify an individual’s responsiveness to drugs, or an individual’s carrier status (which may be important for reproductive decisions), or whether an embryo is free of serious genetic vulnerabilities. The promises of WGS are easier to realize because the cost of doing this is about $1000 today. However, there are some devilish details within this DNA. First, there are privacy protection issues. Massive amounts of data (one terabyte per genome) must be stored somewhere secure, but at the same time must be easily accessed in clinical circumstances. Second, such massive data will invariably generate for every individual hundreds or thousands of genetic variants of unknown significance. For many patients this will be a source of persistent debilitating anxiety. Third, some small portion of this data for any patient will be medically significant and medically actionable. But the problem will be the future responsibility of physicians to interpret and manage that data in the light of ongoing medical research that may attach medical significance and actionability to that data of current unknown significance for individual patients ten or more years down the road. Fourth, there are justice issues that will need to be addressed. If the costs of generating and interpreting all this genetic data are socially borne, and if part of the reason for doing WGS is preventive, i.e., identifying genetic vulnerabilities in a patient that can be forestalled through appropriate behavioral change, then should society hold patients accountable for failing to undertake the necessary behavioral changes that then result in otherwise preventable costly medical problems? Fifth, though the data from WGS belongs to that patient, it can easily have serious adverse consequences for various relatives of that patient. Who is supposed to be responsible for contacting and informing those relatives who might be at risk, or whose future possible children might be at risk, for future serious genetic disorders? There you have examples of those devilish details in the DNA.