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Bioethicists Discuss Risks of Sharing Genetic Information on the Web

Posted Jul 08 2009 11:43am

Consumer genomics offered on the web is a burgeoning enterprise. Genomic testing web sites fall roughly into two categories: those with a medical/scientific orientation such as DNADirect. Sites such as these use a vocabulary such as genomic medicine to indicate an interest in the diagnosis of genetic diseases in the population being tested and provide professional genetic counseling. Other web sites such as 23andMe provide disease discovery by genetic testing but use a vocabulary including words like ancestry, sharing, and community to indicate that one of their missions is to provide networking with other individuals who may be blood relatives. These latter sites have a social/networking orientation. It goes without saying that the business model of these latter sites raises some privacy issues (see: Risks of sharing personal genetic information online need more study, Stanford bioethicists say ). Below is an excerpt from this article with boldface emphasis mine:

With just $399 and a bit of saliva in a cup, consumers can learn about their genetic risk for diseases from breast cancer to diabetes. Now, thanks to social networking sites set up by personal genomics companies, they can also share that information with family, friends and even strangers on the Internet....But according to bioethicists from the Stanford University School of Medicine, sharing genetic information online raises a host of ethical questions....Because genetic information applies to more than one person, issues of privacy and consent become complicated. "For example," [a bioethicist commented], "if you receive information on your breast cancer risk and share it with others, you might also be sharing information about your daughter's risk for breast cancer — even though she never consented to have that information shared."....In most cases, customers mail in a DNA sample for sequencing, and then get both raw data and an interpretation of their genetic profile. A few companies, including 23andMe, also let customers create a public profile and share their genetic data through a company-sponsored social networking site.For now, there aren't any laws that govern the exchange of genetic information online. But as genetic analysis becomes cheaper and more widespread, more and more people will have access to their DNA code — and experts fear that consumers may share genetic data without realizing the potential implications for themselves and their families. In addition, both consumers and their health providers may have trouble interpreting data provided by personal genetics companies.... Estimates of disease risk are often based on small, unreplicated studies in the biomedical literature, but consumers may not understand how preliminary this data is."Results depend on the number and type of markers that are used, as well as how robust their databases are," [the bioethicist] said.

As I understand the issues raised in this article plus prior knowledge, there are at least three problems raised by genomic testing web sites: (1) although the tested individual may provide informed consent for the test, the results may have a harmful effect on other blood-related individuals who have not provided such consent; (2) sharing personal genetic data with strangers may lead to mischief at some later time based on the knowledge that the tested individual is predisposed to develop a disease; and (3) estimates of disease risk may be based on faulty or inadequate data, which is to say that they may not be correct and the life of the recipient of the incorrect data may be colored or even ruined. Hospital clinical labs and reference labs are highly regulated by state and federal bodies due to the criticality of the test results being reported by them. It seem quite odd that there is no similar regulatory oversight for consumer genomics web sites. I suspect that the issue is not whether this regulation will occur but rather when it will take place.

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