While there was no evidence of harm to research participants in these cases, they point out the need for stricter adherence to ethical requirements and stronger monitoring of research. At recent congressional hearings it was alleged that neither Jesse nor his parents fully understood the degree of risk associated with the research. In the past, researchers were motivated by the desire to enhance their reputations in the scientific community and by a desire to solve significant medical problems. Today, with multimillion-dollar private companies racing to unlock the human genome, the old norms do not apply. It appears possible to patent genetic knowledge and apply it to specific, developing new treatments for a wide range of physical and mental disorders.
Universities compete to attract private capital from the health and pharmaceutical industries.
Quite simply, biomedical research is hot and there are fortunes to be made. Ethical issues and controversies will increase dramatically in number and complexity, vested interests will conflict, and the lives of people who will have little control over how problems are resolved will be profoundly affected. NAMI has contributed to solving some problems in research ethics by developing a training program for our members. We trained our first group of NAMI members and expect to train an additional 50 at our San Diego convention. NAMI is also helping link our trainees with university IRBs, and we are planning to continue to share information we learn from our experiences.