A new book, "When Science Offers Salvation: Patient Advocacy and Research Ethics" (Oxford University Press), by Rebecca Dresser, J.D., professor of law and ethics in medicine at Washington University in St. Louis, examines the roles of patients, community members and research advocates in setting research priorities, guiding allocations of vast sums of federal research funding and planning clinical studies.
Research advocacy is becoming increasingly commonplace - from celebrities such as Michael J. Fox and Christopher Reeve, whose medical conditions have led them to promote research for the appropriate cure, to community leaders representing a specific population, to clinicians or researchers, whose work brings them in contact with a certain disease.
Following in the footsteps of HIV/AIDS activists, today's advocates have become vocal partners in the health research enterprise, as they lobby for research funding, encourage study participation and help evaluate studies. Dresser stresses that advocates representing an array of patient groups have played a major role in helping make health research more responsive to the people it is designed to serve.
But while research advocacy can help make research more ethical, it raises ethical issues of its own, Dresser notes. In the biomedical field, the involvement of stem cell and gene transfer research with human embryos and xenotransplantation's use of tissues or organs from another species also raise the ethical stakes.
Dresser cautions against premature attempts at novel interventions in humans and the blurring of boundaries between research and treatment. She cites the devastating effect on patients and their families when potential outcomes of research are exaggerated and risks are downplayed.
"There is a widely held faith that research will rescue us from the burdens of being human - from the illnesses, suffering and death that go along with our status as biological organisms," she says. "This book describes some of the costs of this faith and emphasizes that scientific progress is almost universally slow, highly uncertain and complicated to measure."
"Reducing these costs will require advocates, scientists, officials and the rest of us to become more realistic about the sort of salvation science can offer," she adds.
To reduce public confusion about the differences between experimental interventions and established therapies, advocates should promote straightforward information about clinical trials and acknowledge the limits of research, Dresser says. To minimize competition and questionable decision-making in research funding, they could expand their view to encompass the best interests of numerous patient groups and broader societal concerns, including greater access to standard health care.
Additional Contact:
Rebecca Dresser
Professor of Law
Professor of Ethics in Medicine
Washington University in St. Louis
Office: 314-935-8769
E-mail: dresser@wulaw.wustl.edu
Homepage: http://www.wulaw.wustl.edu/Academics/Faculty/Bios/dresser.html