Presidential Panel Wrestles with Ethical Issues Linked to Clinical Use of Whole Genome Sequencing
By Alex Philippidis,
Genetic Engineering & Biotechnology News
| 02. 23. 2012
The U.S. Presidential Commission for the Study of Bioethical Issues is grappling with many of the ethical issues arising from the falling price—and resulting potential for increased use—of whole genome sequencing in clinical care. The aim is to find the balance between researchers’ use of such data and the privacy of individuals whose genomes are under study.
Addressing the committee on February 2, speakers offered varied perspectives on key questions: How is genetic information collected and stored? Who will interpret this genetic data? Is it ethical to allow healthcare providers to interpret the data without a health systems infrastructure to help them interpret it? What will be the privacy protections for patients?
The commission plans to discuss its recommendations publicly and come to consensus views at its August meeting. Recommendations are to be finalized in a report to President Barack Obama set to be completed this fall.
“The Norman Rockwell model or Marcus Welby model that your doctor knows and remembers everything and can do it all right is hopelessly inadequate for this era of data-intensive healthcare,” said Daniel R...
Related Articles
Several recent Biopolitical Times posts (1, 2, 3, 4) have called attention to the alarmingly rapid commercialization of “designer baby” technologies: polygenic embryo screening (especially its use to purportedly screen for traits like intelligence), in vitro gametogenesis (lab-made eggs and sperm), and heritable genome editing (also termed embryo editing or reproductive gene editing). Those three, together with artificial wombs, have been dubbed the “Gattaca stack” by Brian Armstrong, CEO of the cryptocurrency company...
Alice Wong, founder of the Disability Visibility Project, MacArthur Genius, liberationist, storyteller, writer, and friend of CGS, died on November 14. Alice shone a bright light on pervasive ableism in our society. She articulated how people with disabilities are limited not by an inability to do things but by systemic segregation and discrimination, the de-prioritization of accessibility, and the devaluation of their lives.
We at CGS learned so much from Alice about disability justice, which goes beyond rights...
By Adam Feuerstein, Stat | 11.20.2025
The Food and Drug Administration was more than likely correct to reject Biohaven Pharmaceuticals’ treatment for spinocerebellar ataxia, a rare and debilitating neurodegenerative disease. At the very least, the decision announced Tuesday night was not a surprise to anyone paying attention. Approval...
By Lucy Tu, The Guardian | 11.05.2025
Beth Schafer lay in a hospital bed, bracing for the birth of her son. The first contractions rippled through her body before she felt remotely ready. She knew, with a mother’s pit-of-the-stomach intuition, that her baby was not ready either...
