Biomedical researchers are increasingly looking to Silicon Valley for access to human subjects, and Silicon Valley is looking to biomedical researchers for new ventures. These relationships could be a boon to medicine, but they also raise questions about how well-informed the consent process is and how securely the privacy of the subjects’ identity and data is kept. Other than a few quotes in the popular press, bioethicists have had little to say on the topic, although those whom I have spoken with agree that more attention is warranted. And so, in the current issue of the Hastings Center Report, I invited readers to write commentaries for Bioethics Forum.
Since the journal went to press, more has happened, adding to the case for examining how social media and technology companies are changing the way human subjects research, and especially genetic research, are conducted. The latest news has been about 23andMe, the consumer genetic testing company supported by Google, and about Google itself.
This month, 23andme raised $115 million to be used to expand its consumer genetic testing business and its laboratory research capacity. The company is already involved in research. It sells drug companies and academic institutions access to its research portal, which has a database of more than 650,000 people, customers of its genetic testing service who have consented to make their data available for research. This data consists of deidentified genetic profiles and “more than 225,000 phenotypic data points, including demographic, clinical, family history information and more.”
23andMe says that its research portal is “designed to disrupt the way that genomic studies are conducted by empowering scientists to make research discoveries in a faster and more targeted way than ever before.”
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.