From the NIH: Biospecimen policy: Family matters

Nature. 2013 Aug 8;500(7461):141-2. doi: 10.1038/500141a.

Biospecimen policy: Family matters.

Hudson KL, Collins FS.

Source

National Institutes of Health, Bethesda, Maryland, USA. kathy.hudson@nih.gov

PMID:

 

23925224

 

[PubMed - indexed for MEDLINE]

"In March, two of the most deeply held values in the medical-research community — public data-sharing and respect for research participants — collided when the genome of the ubiquitous cell line HeLa was published¹ and posted in a public database. Controversy ensued. The full sequence data could potentially uncover unwanted information about people whose identity is widely known: the family of the woman from whom this immortal line was derived 62 years ago, Henrietta Lacks."