Biomedical Ethics

By Jack Freer, MD

Biomedical ethics is a young, evolving field. The discipline as we now recognize it took shape in the mid-20th century as advances in the scientific foundation of medicine resulted in new dilemmas that were not strictly biomedical. Rather, these quandaries required a shared perspective that drew upon the humanities and social sciences. The earliest dilemmas included equitable dialysis allocation—but this interdisciplinary approach was soon applied to countless decisions in both public policy and patient care.

Contemporary biomedical ethics subsumes a number of different clinical activities and academic disciplines. Hospital ethics committees participate in dispute mediation among patients, families and staff. University academic programs study empirical and conceptual matters relative to clinical, legal and societal implications of ethical analysis. Looking forward to the next 25 years and beyond requires that we anticipate parallel changes in biomedical science and clinical care.

I expect that many aspects of contemporary clinical bioethics will continue to migrate into clinical medicine. Topics like informed consent, decision-making capacity and end-of-life decisions will properly take their place in the comprehensive care of patients, rather than remain a separate discipline of medical ethics. Ethics committee meetings will be replaced by interdisciplinary team meetings. Similarly, research ethics will continue to evolve into an integrated compliance and institutional review board (IRB) function within the research framework.

What I expect to remain relatively unchanged is the scholarly function of the academic institution. Advances in medical science will necessarily create new problems and dilemmas in the realm of biomedical ethics. A thorough, deliberative process that is guided by clear thinkers and informed by human history will produce the best answers to these seemingly unique challenges. Indeed, many of these new situations will echo prior circumstances. The analytic approach to these dilemmas will help determine which historical references are relevant and which are not.

This historical perspective can be found in the growth of the gene-editing technology CRISPR-Cas9. CRISPR is a powerful tool for editing genetic material by replacing nucleotide sequences. It appears to be a promising technology for correcting genetic mutations, such as the one that causes cystic fibrosis. Presumably, this modality is capable of other edits, raising the possibility of preventing other diseases or even enhancing functional capabilities or physical appearance (if and when these traits can be localized on the genome). When one places CRISPR in the context of history, however, we see that it cannot be separated from the matter of eugenics. Eugenics is the advocacy for improvement in the quality of the human genetic makeup by means of selective breeding. In the early 20th century, there was an active eugenics movement in the U.S. that had strong ties to academia. This movement and educational programs associated with it likely resulted in state laws permitting involuntary sterilizations and antimiscegenation laws criminalizing interracial marriage.

Now that we are able to modify genetic material directly (rather than with selective breeding), society must revisit the thorny issue raised by earlier generations of scientists and governments. Time will tell whether it was the goals of eugenics or their practical implementation that were more odious. The answer to this and many related questions will be the focus of bioethical inquiry into this new modality.

UB is well positioned to address these and similar issues that arise in the next quarter century.  The breadth of academic programs across the university could provide the foundation for a robust ELSI (Ethical, Legal, and Social Implications) research group for emerging technologies. Similar to ELSI programs in genomic or nanotechnology projects, a permanent unit would be able to address these issues for novel endeavors early in their development.