THE WRITING IS ON THE WALL

BY GREGOR WOLBRING

e-mail: gwolbrin@ucalgary.ca Webpage http://www.thalidomide.ca/gwolbring

Bio/gene technology research is developing at breathtaking speed. The sequencing of the human genome is more or less completed and the race is on to identify the gene products encoded by the genes. But what now? What is to be done with this knowledge? The claim is that this knowledge will be used for the good of humankind. But who decides what is good for humankind? It is claimed that the new knowledge will help eradicate disease and suffering. But who decides which genes are 'defects' in need of fixing, and who decides what is suffering? Who will cover the expenses associated with "fixing" genes and how will people afford to use the technology? How will we determine who should be allowed access to the technology? These are just a few questions we must ask ourselves. How will we answer these questions? If our current uses of existing information about genetics and technology are any indication, a few conclusions can already be drawn.

1) People in marginalized groups and people with characteristics targeted by the new technologies, will not be the people answering these important questions. Already, poor countries and individuals, disabled people, and others with targeted characteristics are excluded from mainstream discussions about the introduction of genetic technologies.

2) So-called positive and negative eugenics practices will be viewed as good for humankind. Today characteristics viewed as defects are already targeted for eugenic practices. Through eugenic practices women lose their right to autonomy and reproductive freedom, becoming instead the quality control gatekeepers of human perfection. In a 1995 Ms. Magazine article, Laura Hershey asserts that, although prenatal testing appears to empower women because it allows for reproductive choices, it is actually asking women to ratify social prejudices (Hershey, L. (1995) Choosing disability, Ms. Magazine 5. pp. 26_32). Robert Edwards, the world-renowned embryologist, the creator of the first test tube baby, has predicted that the increasing availability of prenatal screening for genetic diseases gives parents a moral responsibility not to give birth to disabled children. According to Edwards, "Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children." It follows that parents will be under similar pressure to use these technologies to attempt to improve the quality of their children by adding genes thought to be advantageous. Having disabled babies will be 'sin', says scientist by Lois Rogers http://www.sunday-times.co.uk/news/pages/sti/99/07/04/stinwenws02034.html?999

3) Many abilities, attached to the new knowledge and the new technologies, will only be available to the people who can pay for it. This will not only broaden the gap between rich and poor parents within any given society but also broaden the gap between rich and poor countries.

4) Our propensity to judge each other, based on attributed characteristics will increases our potential for intolerance and the appearance of an Animal Farm philosophy in which some are more equal than others. Different characteristics will be targeted, depending on the cultural political, philosophical, economical and spiritual background of any given society.

5) Elimination of unwanted characteristics might take place before and after birth. Many characteristics labeled as disease and disability are already so targeted. Euthanasia and infanticide might become after-birth eugenic tools, especially in cases where the individual does not have access to the pre-birth technologies (due to individual or country poverty).

6) If society has the right to attempt to create "perfect" members of society wouldn't a company have the right to demand perfect workers? Would an insurance company have the right to cover only perfect clients?

These are just a few consequences of applications of the new genetic knowledge that I foresee. Many more will surely follow. But it all boils down to the fact that humans become a commodity for society and the powers that be will decide which humans will be allowed to be part of society and which will not.

Dr. Gregor Wolbring is a Biochemist at the Dept. of Biochemistry and Molecular Biology Faculty of Medicine and Adjunct Assistant Professor at the Dept. of Community Rehabilitation and Disability Studies Faculty of Education both University of Calgary.

He is also Founder and Coordinator of the International Network on Bioethics and Disability: network that looks at how bioethical issues such as biotechnology and euthanasia affect marginalized groups. To subscribe, go to www.egroups/subscribe/Bioethics or send a blank e-mail to bioethics-subscribe@egroups.com