DNA Biobanking In Olmsted County, A Deliberative Community Engagement

Why Talk about Biobanks?

Importance of Community Engagement

There are many expert opinions on how to create and run DNA biobanks. But some of the most fundamental questions about DNA biobanking, such as what concerns people have and how to protect their privacy, do not require scientific expertise. In order for a DNA biobank to be successful, scientists and doctors must set up policies and procedures that protect people's interests and that people can trust. People need to feel comfortable about donating their DNA; otherwise, no one will give their DNA to the biobank and no research will take place. Your views are important.

Controversies and disagreements about DNA biobanks

Biobanks are becoming increasingly valuable in health research, but their possibilities are so numerous, and so many of them remain unrealized, that there is considerable disagreement about where the promises and perils lie. Scientists disagree about which types of collection are best. Geneticists often prefer collections of disease samples, and hope that their research will produce new drugs and treatments. Epidemiologists, who want to understand the genetic and environmental causes of public health threats, need lifestyle information and multiple samples collected from large numbers of individuals throughout their lives. However, scientists do agree on one thing: they can learn more with easier and cheaper access to samples.

But others raise concerns about genetic research. Some worry about bad consequences for themselves or their family members if they donate DNA samples to a biobanks. Some disease sufferers hope desperately for DNA research to lead to new drugs and cures, but other people are concerned about who may find out that they have a gene for a particular disease. There are fears of discrimination if employers and insurers gain access to people's genetic profiles. There are questions about who profits financially from donated samples. There are concerns about privacy and civil liberties, and about genetic researchers "playing God."

Some people have special concerns. What control should individuals have over their samples? The Havasupai Tribe in New Mexico brought a lawsuit in 2005 against researchers at Arizona State University when they discovered that samples donated for diabetes research had been used for other purposes. Researchers were using the Tribe members' samples to look at human migration patterns and to look at genes for schizophrenia, without their permission.

How biological samples and medical information should be collected, stored, accessed, and used is a hot topic!

Important Questions

How should Mayo set up its biobank? There are many questions to answer.

1. What must Mayo do to assure your trust in its biobank?
   1. Should the community be involved in ongoing oversight of the biobank collections? And if so, how?
   2. What values should guide the actual collection of samples and research use of health information?
   3. How should access to the health information and DNA samples be managed and controlled?
2. How should any benefits from the biobank (such as financial profits from patents) be shared?
3. What kinds of risk should the community accept in order to benefit from medical research? How should the correct balance be determined, say of privacy protection versus cures?