The View From Here

I was lucky enough to attend an ELSI 2.0 sponsored conference at the Centre for Law and Genomics in Tasmania, Australia. It was an amazing event, allowing ethicists, researchers, attorneys, and commercial providers to discuss what aspects of genomic research and human specimen research should be regulated- but more on that soon!

During the conference, one clear area of fundamental disagreement emerged amongst attendees- the fundamental question of whether learning insights on the impact of disease in large populations was of benefit to participants in this type of study. In other words, does advancing information that would benefit the “greater good” of future generations of patients qualify as a benefit to an individual deciding to participate in human specimen research. The divide was clear- most researchers expressed a strong belief in the ability of research to advance medicine, and thus to benefit participants by allowing this rapid advancement of knowledge during the lifetime of the research participant and the research participant’s family’s lifetime. Some Ethicists, however, were more cautious about whether research truly advances medicine at all, pointing to multiple examples of erroneous conclusions that contributed to harmful therapies or incorrect treatments being employed in large populations. Interesting…

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