Genomic Research Ethics: Special Rules for HeLa Cells

In her 2010 book The Immortal Life of Henrietta Lacks, Rebecca Skloot told the story of Henrietta Lacks and the cell lines derived from her cervical tumor biospecimen (cell lines known to scientists simply as “HeLa cells”). To make a long story short, in 1951 physicians at Johns Hopkins Hospital took a biopsy from a patient, Henrietta Lacks, and from that biospecimen developed the first human cancer cell line. The biospecimen was taken without Lacks’ knowledge or informed consent. No laws were broken in the creation of the HeLa cell lines that are now recognized (pdf) as “the most widely used human cell line in the world.” She died in 1951, and it was reportedly not until 1973 that her family learned about the HeLa cells (two years after Henrietta Lacks’ name was published as the source of HeLa cells in a scientific journal). As the table below shows, this incident occurred long before the adoption of regulations and ethical guidelines for biomedical research that, today, generally require researchers to obtain voluntary, informed consent from individuals before performing biomedical experiments.
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Filed under Genetic Testing/Screening, Genomic Policymaking, Genomics & Medicine, Genomics & Society, Informed Consent, International Developments, Pending Regulation, Privacy

Ninth Circuit Orders Rehearing of Haskell v. Harris

1037193_dna_fingerprint_5When the Supreme Court issued the Maryland v. King opinion on June 3, 2013 upholding Maryland’s DNA Collection Act, numerous cases were pending in which similar DNA fingerprinting upon arrest statutes in other jurisdictions were being challenged. The dissenting justices encouraged cases to press forward and give the Court an opportunity to change its current Fourth Amendment course, with Justice Scalia writing, “I … hope that today’s incursion upon the Fourth Amendment, like an earlier one, will some day be repudiated.” It was only a matter of time for us to see just what the impact of the Maryland v. King decision will be.
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Filed under General Interest, Genomics & Society, Privacy

Readers Respond to ACMG Recommendations Post

57 sauceThe GLR received some interesting comments on my recent post about the American College of Medical Genetics Gene Screening Recommendations. Here are two of the comments. As we are still in the early stages of what is likely to be a continuing and controversial story, we welcome others.

From an anonymous GLR reader:

Just read and am very intrigued by the new GLR piece. I think the potential for recommendations like those to be implicated in setting the standard of care in certain medmal cases is there, although I can’t imagine that these recommendations could seriously be argued (well, I’m sure they could be argued – but I don’t think the argument is at all a winner) as the standard of care now, since I don’t really expect that their adoption has yet been widespread. But it sure will be interesting to see somebody try at some point down the road. I just think, if and when that happens, it would have to be in a case where whole genome or whole exome sequencing was performed for a specific clinical purpose.

That brings me to the second thing I found interesting about your piece:
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Filed under Genomic Sequencing, Genomics & Medicine, Genomics & Society

Approved North Carolina State Budget Includes Funds to Compensate Sterilization Victims

Jennifer K. Wagner, J.D., Ph.D., is a solo-practicing attorney in State College, PA and a research associate at the University of Pennsylvania’s Center for the Integration of Genetic Healthcare Technologies.

Sterilization_statesNearly a year and a half ago, the GLR reported that North Carolina was one step closer to compensating the victims of its sterilization program. North Carolina’s eugenics program started with legislation in 1919 and was not officially abolished until 1977 (though the program’s sterilizations were performed between 1929 and 1974). The program victimized more than 7500 individuals and the number of victims surviving in 2010 was estimated at approximately 2950.
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Filed under Genomics & Society, Informed Consent