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How Are Ethical Issues Being Addressed?

[A set of standardized slides addressing the ethical, social, and the cultural issues of the Project can be found here.]

The International HapMap Project raises both familiar and new ethical issues. The Project has addressed these issues by incorporating ethical considerations into the initial design of the study and by close and continuing collaborations among geneticists and ethicists. An Ethical, Legal, and Social Implications (ELSI) Group provides ongoing guidance to the HapMap Consortium.

The individual DNA samples used in the Project are identified as coming from a male or a female, from one of the four populations participating in the study, and, in the case of the parent-child trios, from either one of the parents or the child. The samples are anonymous with regard to individual identity. Samples cannot be connected to individuals, and no personal information is linked to any sample. As an additional safeguard, more samples were collected from each population than were used, so no one knows whether any particular person's DNA is included in the study. No medical or phenotypic information was obtained from the donors.

Since the samples include no personal identifiers, the risk to individual donors that privacy might be compromised is minimal. However, because each sample is identified as coming from a particular population (see Guidelines for Referring to the HapMap Populations in Publications and Presentations), group stigmatization and discrimination may occur from studies that use the HapMap. For example, researchers may find that a genetic variant associated with a higher-than-average risk of a disease is more common in one population than another. This information may be misinterpreted to mean that every member of a group has a higher-than-average risk of the disease, even though the higher risk may apply only to those individuals, inside the group or out, who have that variant.

Also, genetic findings could undermine established cultural or religious traditions or legal or political status. Many groups have firm beliefs about the origin of the group or about the relationship of the group to other groups, and these beliefs may be challenged by findings built on the use of the HapMap. In addition, genetic findings may conflict with the social and cultural methods that groups have developed to determine who is a member of that group.

Finally, the results of the Project could be misinterpreted to imply that constructs such as "race" are precise and highly meaningful biological categories. In fact, the information emerging from the Project is helping to demonstrate that common ideas about race emerge largely from social and cultural interactions and are only loosely connected to biological ancestry.

The Project has addressed ethical issues in a variety of ways. Each of the DNA donors gave individual consent to participate in the Project and signed a consent form that grants permission for the DNA samples to be used in future studies approved by relevant ethics committees. The form was modified to meet the concerns of each of the populations involved in the study and was approved by ethics committees in each community.

In addition, the Project initiated a process of community engagement before seeking informed consent from individuals. Teams of geneticists and ethicists worked in each of the communities involved in the Project to give community members a chance to learn about and discuss the issues raised by the Project and to provide input into how samples should be collected and described. The engagement process varied from country to country, but in most cases it involved a combination of individual interviews, focus group discussions, community meetings, and public surveys. This process of community engagement helped researchers understand and respond to people's attitudes, beliefs, and concerns. It helped inform communities and individuals about the nature and goals of the Project. And it created a climate in which research could proceed in an atmosphere of greater openness and trust.

In each of the communities participating in the Project, a Community Advisory Group (CAG) will function as a liaison between the community and the Coriell Institute, where the samples will be stored. Coriell will distribute quarterly reports and periodic newsletters to the CAG in each donor community so that community members can learn how their samples are being used and obtain general information about the Project. Since no personal identifiers were included with any of the samples, individual donors cannot be recontacted to seek consent for each new proposed study. For the same reason, sample donors will not be able to withdraw their samples from the repository, though an entire community could decide, after careful discussion and consultation with researchers, to withdraw its samples from the repository.

No drugs or other commercial products will be developed as part of the Project. However, other studies will use the HapMap to find genetic variants that contribute to disease and will translate those discoveries into diagnostic and therapeutic products. Eventually it is expected that the HapMap will benefit the health of all people, including the members of the participating communities, although these benefits may take years to be realized.


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