Alberta Innovates- Health Solutions

English naturalist Charles Darwin, famous for his theory of evolution, suffered from depression and became a recluse at a time when he was at his most creative. So it's ironic that many people have advanced the notion of the survival of the fittest as a reason to eliminate the mentally ill and people with other disabilities from society, says University of Alberta Educational Psychology professor Dick Sobsey, a speaker at the recent ethics and genetics conference in Edmonton.

Who decides which lives aren't worth living? The specialist on disabilities suggests that it is a question that defies measurement, citing a survey published in Archives of Physical Medicine and Rehabilitation that was conducted on people who breathe with respirators and their caregivers. Using an eight-point "quality of life" scale, researchers asked these two groups to rate their quality of life. Both the care givers and the people who were on respirators gave their own quality of life a rating of five point two on the scale. But when the caregivers were asked to rate the quality of life of the people they cared for, the rating slipped down to two. "While some people may be looking at quality of life as some kind of measurable phenomena, a careful look at any scientific attempt to quantify quality of life will show we are really incapable of doing it," Professor Sobsey notes.

Another conference panelist, ethics specialist Dr. Dorothy Wertz, says that worldwide studies she conducted of primary care physicians and genetics professionals suggest commercial factors could influence how doctors deal with people who have genetic diseases. Dr. Wertz says that "primary care physicians in the USA have a poor medical knowledge about basic functioning of people with genetic disorders, and they are much more open to information provided by pharmaceutical companies." Companies with a vested financial stake in selling drugs to those afflicted with a genetic disease will often paint a grim picture of disabilities, Dr. Wertz comments. She suggests the best way to protect disabled people from abuses related to new genetic technology is through education.

An informed public and a cautious attitude when considering developments in genetic research are essential measures to preserve human rights, Professor Sobsey says. "So when we develop these notions in society that we would be better off without this kind of person or that kind of person or this kind of defect, we need to exercise a great deal of care about whether we are really making life better for anyone, we need to preserve the rights of people to be a part of a society with the greatest possible diversity."

Dick Sobsey, Ph.D., is Professor of Educational Psychology and Director of the J.P. Das Developmental Disabilities Center at the University of Alberta.

Dorothy Wertz, Ph.D., is Senior Scientist in Social Science, Ethics, and Law at the Eunice Kennedy Shriver Center for Mental Retardation in Waltham, Mass.

• Shriver Center website: http://www.shriver.org/index.htm

• J.P. Das Developmental Disabilities Centre http://ernie.educ.ualberta.ca/ddc/centre/DDC.php