The Genetics and Public Policy Center (GPPC) was established by Johns Hopkins University by PEW charitable trusts. Originally published in The American Journal of Human Genetics, Volume 85, the GPPC conducted a survey of over 4500 individuals pertaining to views on Privacy in Genetics and Participation in Biobank research.

The results summarized below show that most everyone had concerns over privacy but this was not necessarily preventing them from participation in the research. The question of who controlled the information, and disclosure of research results to the individual had significant influences on participants willingness.

From the article:
Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted.

Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them.

However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately.

Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back.

Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank.

About the Genetics and Public Policy Center
The tremendous success of the Human Genome Project has laid the foundation for a true revolution in public health, promising improved diagnosis, more effective medicines, and individually tailored health care. The Genetics and Public Policy Center was created in 2002 at Johns Hopkins University by Pew Charitable Trusts to help policymakers, the press, and the public understand and respond to the challenges and opportunities of genetic medicine and its potential to transform global public health.
http://www.dnapolicy.org/

Link to The American Journal of Human Genetics
http://www.cell.com/AJHG/