Human Genome Project

Tuskegee University in Alabama hosted a conference on the Human Genome Project (HGP) in September 1996. The goal of the conference was to make African-Americans more aware of and involved in this $15-Billion government investment. I was pleased to represent the VHL Family Alliance with a poster presentation. Scientists from across the country shared their thoughts and perspectives on the issues surrounding the ethical, legal, social issues regarding the HGP and just how the data for the project is being collected.

There is some controversy as to just how inclusive and varied the collection process is. Dr. Fatimah Jackson of the University of Maryland raised some very important questions. The laws of biology state that if you want to know about a particular plant, for example, you go to where the plant first started or where most of them are now. The HGP is mapping the DNA of people. Humanity began in Africa, and China has the largest population today. How many of the samples collected for th HGP have come from China and Africa?

Given the history of the relationship between African-Americans and the government, can the government be trusted to be fair? For forty years the government allowed blacks from Tuskegee with syphilis to remain untreated, to see what would happen to them, when there was well-known, effective treatment. Even though that was many years ago, it is one of many examples which have left the American black community distrustful. There is now an effort to find a behavior gene. The search is centering on the criminal justice system. We have to question whether the results will be fair or ethnically biased, since for socioeconomic reasons in the United States, blacks make up the majority of the prison population but are a minority of the general population. Behavior is not entirely determined by genetics; environment, social, economic, educational and cultural aspects must also be considered.

It is hoped that the HGP will help in the treatment of disease. This is not a reality at this time but we can see that with some diseases, VHL being one, that being able to detect the mutation in family members can be a great help. Those with the mutation know they have to be watched, and those without it save money on expensive screening.

The conference also touched on insurance issues. Finding certain genes has made it impossible for some people to get insurance. They are said to have “pre-existing conditions.” People have had genetic disorders since the beginning of time, and there are many more conditions for which we cannot yet read the genetic risk in our DNA. A person who has not had a DNA test and who is considered “insurable” may in fact have a serious risk factor which cannot yet be identified. When I asked why there is such concern now, Joan Harmon of Phoenix Home Life Mutual Insurance Co., Hartford, Connecticut, said that insurance companies want to know what we know — they want full disclosure. My own feeling is that this information is prone to misuse because our knowledge about it is so incomplete, and because insurance people do not know how to interpret the information.

I was very proud to be on the Tuskegee campus. The history there is very rich in American history and it is very beautiful. Booker T. Washington opened the Tuskegee State Normal School for the Training of Negro Teachers on July 4, 1881. Tuskegee University now trains students in veterinary medicine and agriculture.

As published in the VHL Family Forum  5:1, March 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.