COVER
Medical Pike
Scientists renew call for African Americans to join inherited prostate cancer study as nation debates genetic privacy
February 29, 2000. New York /PSA Rising/ - Scientists at Fred Hutchinson Cancer Research Center and the University of
Washington are once again appealing to African-American families to help with the search for genes responsible for inherited prostate cancer (prostate cancer that runs in families)
Nearly 300 families have participated so far in this genetic, family study. Only a handful have been African American. An earlier appeal for African Americans to join the trial was put out more than a year ago in July 1998.
"One limitation of our ongoing research is that few minority families have enrolled," says Dr.
Janet Stanford, an epidemiologist at the Hutchinson Center and at UW who oversees recruitment
of families involved in the Prostate Cancer Genetic Research Study, or PROGRESS.
Reasons to Hold Back, Need for Information
No one knows why African Americans are holding back from this study. Lack of publicity in the right places could be thre main problem. But some African Americans have serious hesitations over subjecting thelmselves to research studies because of past problems. The notorious Tuskegee Study enrolled African-American men who had caught syphilis, which at time was a common STD. Instead of treating these men for the disease with available drugs given to white men, the African Americans, told that they had "bad blood," were subjected to years of blood tests and deliberately were watched over as they sickened and died.
Dr. Otis Brawley of the National Cancer Institute in an interview with us earlier this year said: "Many of my views about ethics and misleading people about what is scientifically
known and what is not known and distinguishing it from what is believed come
from my experiences in working in the aftermath of the Tuskegee Syphilis Study.
The tragedy was initiated and prolonged because well meaning folks who did not
understand, supported the trial and actually conveyed untruths to men
participating in the trial often in an effort not to worry them with something
too complicated."
Dr. Brawley evidently believes in overcoming false fears and conspiracy theories with full scientific, evidence-based information. In an interview with the New York Times last week about high death rates for African-American women from breast cancer, he said that one problem he is working to overcome is women's fears that surgery would spread the cancer.
The Seattle prostate cancer gene study may have underestimated the need to give full information. The appeals it puts out say nothing about important issues that may in fact cause people to hold back. This may go to explain why, in the past eighteen months, only three more African American families joined the study.
National Debate Over Genetic Testing
President Clinton this month issued an order prohibiting federal agencies from using genetic information in any decision to hire, promote or dismiss workers. The order protects 2.8 million federal employees. But what about everyone else? The New York Times (Feb 29 2000) ran a debate on disclosure of genetic testing (When Genes Are Decoded, Who Should See the Result?). Mark A. Hall, a professor of law and public health at Wake Forest University in Winston-Salem, N.C., says many people "overestimate the risk." He says no one is actually misusing genetic information. "Instead, the executive order responds to growing, and somewhat unfounded, fears about the potential misuse of genetics." Halls adds: "The main purpose of this law is to calm public fears to spur development of genetic technologies and to help genetic researchers recruit study subjects."
Wendy Uhlmann, a genetic counselor at the University of Michigan and President of the National Society of Genetic Counselors, sees it differently. She says: "advances in genetic testing hold great promise for surveillance and preventive treatments, yet also hold the potential for stigmatization and discrimination."
Of 292 families participating in the Prostate Cancer Genetic Research Study, or PROGRESS, only six are non-Caucasian. The recruitment emphasis during the next year will aim to attract participation of minority
families, particularly African Americans Now that president Clinton's order has brought the issues of genetic disclosure into the public arena, we can hope to see researchers in charge of this study making stronger efforts to talk to African Americans about prostate cancer genetics in open and nuanced terms. Participants should be encouraged to consult genetic counselors before entering this study.
"Because African Americans have the highest incidence and mortality from prostate cancer of
any group in the world, we think it's important for them to be represented in the study," Stanford says. Prostate cancer kills about 40,000 American men every year. African Americans have a 60
percent higher risk of developing prostate cancer and a 100 percent higher death rate from the
disease as compared with Caucasian Americans. Finding the gene or genes implicated in inherited
prostate cancer may provide clues that will eventually help diagnose, treat, cure and even
prevent the disease, Stanford says.
At least 100 African-American families are needed to participate in this ongoing study.
African-American families with two or more living men who have been diagnosed with prostate cancer are asked to participate Families of any ethnic or racial background that have five or more prostate-cancer survivors. No physical examination, travel or expense is required. Volunteers are asked to donate a blood sample and fill out a mail-in health questionnaire. Family members both with and without prostate cancer, including women, may be asked to participate.
All information will be kept strictly confidential, Dr. Stanford says. If you fall into any one of the above groups and feel you could help and are willing to do so, the number to call for more information is 1-800-777-3035.
E-mail