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NIH Welcomes Community Voices On Genetic Research

By Alison Davis

"Let's talk," said NIH to 57 representatives from communities all across America.

NIH recently engaged in a large, sit-down consultation with ethnically diverse communities on the topic of protecting populations during the course of genetic research. The gathering, entitled "First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research," took place Sept. 25-26 at a hotel in Bethesda.

Communities welcomed NIH's invitation warmly.

"I want to thank you for welcoming us into your house!" said John Castillo, a consultant from Okemos, Mich., who attended along with Jose Gamez of Lansing, Mich., to convey Latino views about community involvement in genetics research. Gamez is a community dialogue facilitator on issues of concern arising from the Human Genome Project.

John Castillo of Okemos, Mich., attended to convey the Latino point of view on genetics research.

In addition to Latinos — and cutting across a wide swath of America — group participants included African Americans, Asian Americans and Native Americans. Also participating were representatives from several occupations including anthropology, clergy, law, and the natural and social sciences. Patient advocates for various diseases also attended the consultation. Collectively, the group represented 26 states, the District of Columbia, 5 American Indian tribes, Puerto Rico, Finland, India and the United Kingdom. A resounding message from attendees was, "We want to be included at every stage in the research process."

Beyond Individual Protections

Over the past few years, NIH has sharpened its focus on involving the public in its planning processes and in soliciting public opinions about how tax dollars are used to better the health of all Americans.

"This is an issue of extraordinary importance to all of us," said Dr. Ruth Kirschstein, NIH acting director, enlisting the group to help guide NIH in this "new and unknown territory...We need your ideas on how to communicate with, and provide safeguards for, the public."

Judith Greenberg, director of the Division of Genetics and Developmental Biology at NIGMS, organized the community consultation after wrestling with issues surrounding the use of population-based samples in genetics research. As project officer for the NIGMS Human Genetic Cell Repository, a bank of cell lines and DNA used by scientists all over the world, she recognized the urgent need for developing new policies to protect not just individual research subjects (who are explicitly protected under federal legislation), but also populations and communities who participate in genetic research studies.

"Scientists are very interested in identifying genes that play a role in many common disorders — heart disease, diabetes, asthma, cancer — and one way is through studying people who are more closely related to each other, such as people who have similar ethnic or racial or geographic backgrounds," she said.

But Greenberg is well-versed in the potential discrimination and/or stigmatization that could result from such studies if they aren't conducted properly. "It seemed to me that it was time to listen to what the stakeholders — individuals from diverse communities — think about this kind of research," she said.

While timely cures and early prevention are the noble goals of research aiming to unearth the genetic roots and determinants of disease, an unintended consequence can be fear, misperception and occasionally stigmatization, said Karen Rothenberg, dean of the University of Maryland School of Law. She spoke in particular about the Ashkenazi Jewish population, which has been intensively studied and has provided researchers with valuable insights about a host of diseases such as Tay-Sachs disease and breast cancer. But the community's involvement has come with a price, she said.

"Fear of genetic discrimination has become a civil rights issue," she said, adding that one public perception is that "Jews have genetic problems."

Too Little Information or Too Much?

One theme that reverberated throughout the 2-day meeting was education. Most participants wholeheartedly agreed that there simply isn't enough of it to go around. In particular, many saw the need for an improvement in the training of scientists — including graduate students — in matters related to cultural sensitivity and ethics, especially as they apply uniquely to particular communities.

So-called "helicopter research," in which scientists fly in, retrieve their samples and go home, is simply not acceptable, said Charles Rotimi, a researcher at the National Genome Center at Howard University who conducts field research in small African villages.

"Nobody wants samples to be collected by an arrogant group of doctors in a M*A*S*H unit," said Rev. William Nebo of the First Presbyterian Church in Livermore, Calif. He suggested that scientists keep in mind that biological researchers' "unraveling secrets" frequently collides with deep-rooted religious convictions.

Many attendees urged that another pressing need is educating the public. "The problem isn't a lack of information, but an overload of information," said Rabbi Gerald Wolpe of the Louis Finkelstein Institute of the Jewish Theological Seminary in Philadelphia. "Part of dealing with discrimination is providing people with [understandable] information."

Trust and Respect

"Why should we trust you?" That's the question communities often ask scientists who visit to conduct genetic studies and collect samples, recounted Maricela Aguilar, a registered nurse and genetics special programs director at the University of Texas Health Science Center in San Antonio.

According to Aguilar, in addition to communicating effectively, researchers must also use common sense and act respectfully. Only then, she predicted, will communities trust scientists.

For some communities, such as parents of children with incurable genetic diseases, the options seem clearer. "We have to trust you," said Suzanne Kindregan of the A-T Children's Project, a nonprofit organization dedicated to accelerating research toward finding a cure for the disease ataxia telangiectasia.

Gov. Malcom Bowekaty of the Pueblo of Zuni

Native American communities offer yet another view. According to Gov. Malcom Bowekaty, tribal leader for the Pueblo of Zuni, community decisions to participate in genetic research are extremely difficult to make. "If we don't make a decision [about participating in genetic studies] now, our people will be in a lot of misery and pain," he said. "But we need [access to] good research data to make these important decisions."

To Do List

Like any good conversation, the community consultation generated lots more to talk about — and hopes for future community consultations, perhaps with even more time for discussion.

According to Greenberg, approaches NIH may consider are the following:

  • Ask researchers to outline in their grant applications specific plans to involve communities in the protocols;

  • Permit scientists to build in funds for community involvement in, and ongoing communication about, research projects;

  • Encourage training of researchers on issues related to cultural sensitivities and interaction and involvement with communities;

  • Compile and publicize a "best practices" list of successful researcher/community partnerships.

The consultation was sponsored by NIGMS, NHGRI, OD, the Fogarty Center, NEI, NIEHS, NINDS, NIA, NIDCD, the National Science Foundation and the Department of Energy. Many NIH staff attended the meeting.

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