Large databanks, such as those created by ambitious, long-term study like the Framingham Heart Study or the Nurses’ Health Study, can be a real gold mine when other investigators use their previously collected data to do their own research. The National Institutes of Health is slated to start recruiting this spring for its proposed All of Us Research, in which it hopes to collect genomes, medical records, and blood samples from one million people.
A recent New York Times article highlights some of the logistical, financial, and ethical issues surrounding the All of Us program. Two large health providers have opted out of participation. Other health and research organizations have indicated they could generate similar data with resources the already have available or could access more easily. Even the question of whether and how to return individual results posed some issues. Organizers had hoped to have genetic counselors return individual genetic results to subjects, but there just aren’t enough counselors available. Never mind the ever-present ethical questions surrounding individual results. For example, is it helpful to return a finding that shows a subject is at risk for a disease for which there is no effective preventive measure or cure? Or to recommend follow-up on a suspicious test result that ends up being nothing?
Please read through the entire article linked above. Some of the issues it raises will be familiar to investigators trying to find the resources and funding to carry out their research, and to IRB reviewers charged with considering the ethics of research proposals.