August 13, 2013 | Posted By Jane Jankowski, LMSW, MS

This past week brought the announcement of an agreement between the living relatives of Henrietta Lacks and the U.S. National Institute of Health (NIH) regarding use of genetic information derived from HeLa cells, NY Times. Henrietta Lacks was a patient at Johns Hopkins Hospital in Baltimore, Maryland in 1951 where she was treated for and ultimately died from, cervical cancer. During her hospitalization, cells were retrieved from her tumor without her knowledge or permission. It is these cells, named HeLa cells, which proved to have an unprecedented ability to grow in laboratory cultures and were the source of many important scientific advances in the 20th century Wall Street Journal . Neither she nor her family ever received any financial compensation for the vast contribution HeLa cells have made to science and society and restitution is not part of the story this week. Privacy of genetic information derived from Henrietta’s cells is the family’s concern, and rightly so. Of note, the story of Henrietta Lacks, her family, and HeLa cells is now widely known with the publication of Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks” in 2010 – a recommended read for anyone regardless of prior interest or knowledge in biomedical ethics

With the ability to perform genome sequencing comes knowledge about an individual’s DNA profile, and this DNA blueprint is shared by blood relatives of the original donor. The policies governing who controls the use and or dissemination of this information with multigenerational impact have been vague to nonexistent. Given that HeLa cells were made available to scientists  before any consent policies were in place, and that the cells are used in laboratories worldwide, the potential for genetic information about Henrietta and her descendants to be made public without warning or permission is very real, and had already begun last year (see Wall Street Journal link above). The NIH responded to the Lacks’ family’s concerns by forming an agreement with the family that two members of the Lacks family will sit on a committee which reviews research proposals related to genome sequencing of HeLa cell lines  NIH Interview . It seems the next advance Henrietta Lacks and her family will provide is likely to come in the form of policy development to assure privacy not only of cell donors, but also for relatives who may be impacted by the genetic information gleaned from such cells. Perhaps a genetic marker for selfless generosity toward science and humanity will be located, as this, too, seems to be one of the remarkable traits shared by Henrietta Lacks and her descendants.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

1 comments | Topics: Consent , Genetics , Research Ethics



Anonymous wrote on 09/29/13 7:30 AM

Genetic privacy isn't something most people ever think about. This kind of feels like sci-fi.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.