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Not So Anonymous - Genetic Data Raises Privacy Concerns

Posted on Apr 01, 2013 by Dr. Julie Nixon  | 0 Comments

By Julie Nixon

Earlier this month a research group at the European Molecular Biology Laboratory in Heidelberg, Germany published the genome of a widely used human cell line, HeLa cells. These cells were derived from a cervical cancer tumour from an individual called Henrietta Lacks who died in 1951. The publication however has caused a furore among scientists and descendants of Mrs Lacks because she never gave her permission for the cell line to be established, and the data could disclose genetic traits borne by other family members. The research team behind the project pulled the genomic data from public databases, but the debate over genetic privacy continues.

 There was no legal obligation to obtain permission to publish the HeLa genome, the tissues from which the cells were derived were discarded in 1951, and no laws at that time prevented the use of such material without consent. High throughput genome scale experiments have been conducted on HeLa cells for years, so arguably some segments of the HeLa genome have been publically available for some time.

 The researchers who sequenced the full genome initially claimed last week that no private medical information about Mrs Lacks or anyone genetically related to her could come from the data they made publically available. However although the cells are mutated, they still contain Mrs Lacks’s genes. It would be relatively easy to analyse the data for genetic markers for human disease, possibly inherited by close relatives.

For research in general, this raises the important issue of whether family members have the right to override the wishes of relatives who volunteer to share their genomic sequence. And morally would scientists be obligated to disclose disease risk to family members?

For those volunteering anonymously for medical research it would seem privacy is not guaranteed. In a recent study published in Science, plugging publically available genetic information into an online service that helps people trace their family histories aided the identification of the anonymous donors and their relatives.

 Genome sequencing, now easily available will provide valuable information to scientists on how genetic variation can lead to disease, but there needs to be a balance between making data available to researchers and protecting people’s privacy. 

It would seem genetic data can be classed as personally identifying information, and as such clear policies need to be in place for how the data is handled, and who can actually access the data.

Julie Nixon

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