Indian-Americans living in Houston were a key part of the HapMap 3 project, which seeks to determine a map of human genetic variation.

Leaders of the International HapMap3 Consortium, including those in the Baylor College of Medicine Human Genome Sequencing Center, analyzed samples from 1,184 people drawn from 11 populations around the world. A report on their findings appears in the current issue of the journal Nature. One of those population groups lived in Houston and was made up of people who came from the western Indian state of Gujarat or who were descendants of people from that part of India.

Community input sought

HapMap leaders wanted people who donated samples to be used in the DNA analysis to understand the project and how the samples would be used, said Dr. Richard Sharp, a former BCM ethicist who is now at the Cleveland Clinic.

Sharp and his colleagues approached Indian-American community leaders in Houston about how best to set up a sample collection project.

"In the United States, there is a lot written about concerns racial and ethnic minorities have about genetic research," he said. Many people point to past abuses such as the infamous Tuskegee syphilis project, in which the health of black men with syphilis was monitored and recorded long after they could have received treatment for their disease.

They saw none of this hesitance in the population of Indian-Americans living in Houston, said Sharp. "We saw enthusiasm for genetics among this group."

Reports to participants

The HapMap project includes funds that allow researchers to go back to the groups that provided samples and update them on the progress of the project.

Sharp said he had done that recently.

"It was great to reconnect with the people involved," he said. "The big news is that the science in the project has been published. The interesting thing is that a lot of the communities that contributed are still involved."

Risks addressed

Risks addressed

"The samples studied for the project were collected without any names or other individual identifiers, and without any associated medical information. So even though extensive genetic information about each sample donor is being made available via the Internet to researchers around the world, and even though the samples themselves are being made widely available to research community for other genetic research projects, there is very little risk that any particular donor could be identified. So the risks to the privacy of individual donors in this project were minimal," said Dr. Jean McEwen, director of the Ethical, Legal, and Social Implications Program at the National Human Genome Research Institute.

However, an important part of the data analysis for the project involves the comparison of populations, not just of individuals. This feature of the project raises the risk an entire population could be unfairly stigmatized if a variant associated with a particular trait or disease were found to have a higher frequency in a particular group, and then that finding were to be improperly generalized to everyone in that group. There is also a risk that some people could erroneously view research of this type as suggesting that there are precise genetic boundaries between racial and ethnic groups, or that such groups are genetically distinct from each other in some essential and highly significant way.

For this reason, and to address various other ethical and social issues associated with genetic variation research, the HapMap project devoted a lot of time and resources to engaging the donor communities in the research through town hall meetings, public surveys and focus groups, and interviews of community leaders—all with an aim toward discovering the community's views about being a part of the HapMap project and about genetic research more generally, said McEwen.

As part of the community engagement, Community Advisory Groups (CAGs) were set up in most of the communities to serve as a liaison between the community and the Coriell Institute for Medical Research, where the samples collected for the project are being stored. The community groups receive quarterly reports that describe the status of the research and how the samples are being used, she said.