Last month the Genomics Law Report, a blog about the “intersection of genomics, personalized medicine and the law,” launched a series called “What ELSI is New?” They invited guest commentaries from various disciplines to provide a short post on what they felt was the most important ELSI issue facing the fields of genomics and personalized medicine. If you haven’t had a chance to peruse the series of commentaries, I’d definitely recommend it. I love the idea of looking at an issue from 360 degrees.
In full disclosure, I was very excited to be invited to contribute to this series. And you can find contributions from familiar players such as the NSGC Board of directors and Sharon Terry of the Genetic Alliance here and here. In considering the series in it’s entirety, I was struck by how many submissions centered on communication: between scientists, physicians, patients, the public. Below are a couple of excerpts I found particularly relevant to the field of genetic counseling.
From Chris Gunter of the HudsonAlpha Institute for Biotechnology:
I am struck by the absolute hunger of the public to understand genomics and personalized medicine… I propose our field engage in our own form of personalization: using education and media in all forms to convert the energy of the public into an army for science…
From Mathew Harper of Forbes:
…if genomics is really going to impact medicine, we’re going to have to start bridging the gap between the companies and scientists doing this early work and the traditional medical establishment…23andMe’s big contribution has been to start this conversation, but we’re still a long way from figuring out how genomics will fit into medical culture, no less into the regulatory framework.
From Zoe Mitchell and Dr. Gavin Harper of Oxford Nanopore Technologies:
As we enter an era of personalized, genomic medicine, the understanding and communication of probabilities is likely to be a stumbling block, not only for the public but for clinicians too…How to provide context, interpretation and counselling around these complex sets of probabilities is a new challenge in statistics, ethics and psychology.
I realize that the importance of communication isn’t news to anyone in the genetic counseling world. However, I like that it seems to be a focal point for the early thought leaders in the genomic era. This, in turn, will hopefully make our job of ensuring that our voice is heard in this discussion, just a little bit easier.