Barbara Prainsack is senior author on a paper published last week exploring public attitudes to direct-to-consumer genetic testing. She kindly agreed to summarise the key findings of the paper for our readers.
Much has changed since the first personal genome testing (PGT) companies three launched years ago. Vivid discussions are taking place about the ethical and societal dimensions of especially the direct-to-consumer sector of PGT, and debates continue on how to regulate the field: Advisory commissions in many countries are issuing recommendations, and regulators have stepped in. In the meantime, Harvard’s Personal Genome Project (PGP) has reached over 1,000 participants, and PGT companies have dropped prices considerably and later raised them again. Of the three PGT companies (23andMe, deCODEme, Navigenics) which launched in autumn 2007, only one (23andMe) continues to sell their tests solely DTC (Navigenics offer their tests through doctors, and deCODEme do both), but numerous other companies have joined the DTC market. This shows that there is clearly an ongoing need for raising awareness and facilitating debates about personal genomics.
The launch of Genomes Unzipped (GNZ) last June, and to an even greater extent, the unzipping of the genome data of its core members, mark important steps on that road. One of the largest achievements of GNZ so far is that it has pushed the debate beyond hypothethical scenarios but enables a discussion of an actual scenario of real people publicly sharing their PGT results.
We hope that with findings from a survey published last week we can also make a small contribution to the debate. Early in 2008, our group at the Department of Twin Research and Genetic Epidemiology, and the Centre for Biomedicine & Society at King’s College London, started wondering what the potential market for such tests would be, for what reasons people would take the test, and what they would do with the results. In autumn 2008, we sent out questionnaires about PGT to 6,510 volunteers, aged 17-91, in the TwinsUK registry. 4,050 people responded to the survey, which to the best of our knowing makes ours the largest survey of public understandings of PGT so far.