Broad-Based Approach' Using a Web site to solicit donors is a creative approach to gathering genetic and medical information, scientists say. Using such information, scientists are working feverishly to unleash new ways to diagnose and possibly cure diseases. But unlike other efforts, the so-called Gene Trust Project by DNA Sciences appeals directly to the general public, bypassing the usually more specific recruitment programs used by universities, hospitals, or pharmaceutical companies for clinical trials. Time and Money Saved DNA Sciences, founded in May 1998, hopes to collect the DNA samples of at least 100,000 people willing to participate in four-year studies. Initial research efforts will focus on Type II diabetes, coronary artery disease, asthma, multiple sclerosis, and breast cancer, and will later expand to a total of 20 common diseases.
Donors participate by completing a confidential personal and family health profile.
If their profile matches what is needed for a current research project, the consumer will be asked to donate a blood sample, which will be collected by an independent, qualified health professional. The company is working with patient advocacy groups and health-related Web sites to speed up recruitment and hopefully, White said, accelerate discoveries. Privacy and Ethical Concerns Knowing that potential controversies could arise from privacy and ethical issues, DNA Sciences worked to ensure that consumer information would not get into the wrong hands, company officials said. All data gathered through the Internet will be encrypted, and information from the DNA samples will be anonymous. Those precautions made Susan Joy Friday of Pacific Palisades, Calif., feel confident about donating information on her 30-plus years of dealing with diabetes and its symptoms.