Researchers can learn a lot with your genetic information, even when you skip survey questions – yesterday's mode of informed consent doesn't quite fit today's biobank studies
For the past few years, you’ve been visiting a collection site where you fill out some questionnaires about your health and daily activities.
- For the past few years, you’ve been visiting a collection site where you fill out some questionnaires about your health and daily activities.
- Because you agreed to contribute your genetic data to the study, you also provided a saliva sample during your first visit.
- You remember reading a long form when you consented to giving your data, but you can’t quite remember all the details.
What are biobanks?
- For example, to study the genetics of diabetes, researchers might collect data on your blood pressure and lipid levels in addition to genetic data.
- Some biobanks, like the UK Biobank, link biospecimen data to other collected data, such as sexual behavior, medical history, weight, diet and lifestyle.
- Private companies like 23andMe also obtain consent from their customers to have their data used in research efforts.
Genetic data and informed consent
- Genetic data, like the data used in our study, is de-identified.
- Further, genetic data for these sorts of genetic studies is used at the aggregate level, meaning it isn’t used to predict or evaluate any one particular individual’s responses or behaviors.
- Researchers aren’t using genetic data to target individuals with certain genetic profiles.
Improving informed consent
- They allow researchers to link many different outcomes and variables together to paint a critical overall picture of human health and behavior.
- And in contrast with the personally identifiable online or phone data that companies collect to show you targeted ads, biobanks collect de-identified data that is evaluated in aggregate.