To view the full article by Andrea Peterson in ThinkProgress, please visit: The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?
In the early 1950’s, doctors at Johns Hopkins took the cells from Henrietta Lacks’ tumor and, without her consent, have used them for years for research. Earlier in March, the entire genome of Henrietta Lacks was published with neither the knowledge nor consent of her surviving family. This privacy breach has “started a new chapter in that tale about the complex relationship between researchers and the privacy of genetic information.”
Some key quotes from Dr. William Pewen, Assistant Professor of Public Health and Family Medicine at Marshall University, and a former top health care adviser to the now retired Sen. Olympia Snowe (R-ME):
- -“The release of Henrietta Lack’s genome illustrates the fact that genetic information isn’t an individual matter — it impacts family members as well. This underscores the need to ensure the rights of individuals and preserve the confidentiality of research data. Once patient privacy is lost, problems are simply compounded. Just how can today’s family members give consent for the next generation?”
- -“[i]n an age of technology advances and ‘Big Data’ analytics, it’s clear that medical data can be used in countless detrimental ways. That will simply be fostered if we allow ethics and human rights to be undermined by expediency.”