THE WRITING IS ON THE WALL
BY GREGOR WOLBRING
e-mail: firstname.lastname@example.org 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
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 email@example.com