NIU professor signs up for research program-DNA Sciences Gene Trust Project offers hope for cancer victims

NIU professor signs up for research program-DNA Sciences Gene Trust Project offers hope for cancer victims


Even though she is the only person in her family to have been diagnosed with breast cancer, Mary Cozad, Ph.D., refuses to let her condition defeat her.

A Spanish professor at Northern Illinois University, Cozad, 53, is married and has two children. She resides in suburban DeKalb. After being diagnosed in May 1998, she happened to read an article in Business Week that appeared last summer. The article described a new research program called the DNA Sciences Gene Trust Project, which seeks to gather information on the relationship of genetics to health and disease. People were invited to participate in the study, and Dr. Cozad took the quiz and logged onto the website.

The researchers contacted her by e-mail, and she learned that she qualified for one of their studies.

“They gave me a number to call,” she said. “They sent somebody from Port-A-Medic to take a blood sample. They are all over the country and specialize in doing insurance exams, mainly. The person they sent was an R.N., and he did a very, very nice job of getting the sample. It was painless and didn’t cost me a penny–only about five minutes worth of time. All the information is totally confidential, not diagnostic. They won’t tell me what my DNA status was. But it goes into this big data bank.”

What happens then? “DNA people who’ve been diagnosed with breast cancer without a family history, and also people who have breast cancer in their families [participate]. I think the more that is known about the possible causes of breast cancer, the better; and it seems to me that what they are doing is extremely worthwhile. Being able to separate out the genetics from what is not genetic–what causes breast cancer and other diseases–that would be wonderful. It was a very minor thing to be able to do. I think most women who have had breast cancer, if they are relatively young and able-bodied, we all become activists. We buy the breast cancer stamps or make contributions to breast cancer research.”

Cozad has been free of symptoms for two years, but she is very interested in continuing with this educational project.

Questions and answers

What is the DNA Sciences Gene Trust Project?

DNA Sciences’ groundbreaking Gene Trust is a database of family and health information that will further the understanding of the interrelationships between genetics, health and disease. It allows interested consumers to participate in genetic research.

How can consumers become involved in the Gene Trust?

Consumers, patients and their families who wish to help advance the understanding of genetics’ role in health and disease can register for the Gene Trust at Individuals are asked to complete a profile that includes information about their own health status, as well as a family history. This information, which is assigned an anonymous code number, is then analyzed by DNA Sciences’ scientists for relevance to ongoing genetics research projects. As a result of that screening, some individuals will be offered the opportunity to participate in a more detailed population study that uses the findings of the Human Genome Project to better identify genetic variations of clinical significance among individuals. If they fit the profile for one of DNA Sciences’ studies, they will be asked to join the Gene Trust and give a one-time donation of blood collected by a qualified health professional. Blood donations from both those with a disease and those without will be accepted. Each person’s unique DNA will be extracted from the blood, securely archived in DNA Sciences’ lab, and used to advance genetics studies. At this point, the consumer’s work is done, and the scientists begin their work.

Who can participate in the Gene Trust?

Everybody can play some role in the Gene Trust: young, old, ill or healthy. DNA Sciences will examine the DNA of people with specific diseases that are known to run in families. In any comparison, it is also important to have a group of people who don’t have the disorder. This means that everyone has a part to play in the Gene Trust.

How is medical and genetic information in the Gene Trust kept confidential?

DNA Sciences is fully committed to assuring privacy and health information confidentiality; no one outside DNA Sciences will be able to associate personal or health information without participant consent. While academic and commercial researchers will be able to access the company’s database of aggregated genetic information, no information about individual volunteers will ever be made available to outside researchers without consent. DNA Sciences employs state-of-the-art security protocols and technology, certified by third parties, to ensure pricacy and confidentiality. Currently, the company’s privacy policy complies with all the safeguards advocated by leading volunteer privacy concerns such as TRUSTe and HON (Health on the Net).

What is the importance of genetics research such as that being conducted by the Gene Trust?

Genetics research can lead to discoveries that link genetic variations with disease and wellness. These discoveries will improve healthcare in the future because they will:

• Provide more precise diagnosis

• Provide more effective use of existing therapies

• Speed the development of new diagnostic products

• Help find new therapies best suited to an individual’s genetics and lifestyle–medicine that is tailored to the individual.

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