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2000 First Web Report
Headlines dot the newspapers: "Baby Conceived to Provide Cell Transplant for His Dying Sister," (1) "Institute Restricted After Gene Therapy Death," (2) The Race [for DNA mapping] Is Over" (3) They speak of a race in our country and the world to map, and maybe alter, the DNA sequences of humans (4). Newspaper articles (5), science journals (6) and popular magazines (7) all discuss the possible impacts of this research, ranging from the honorable to the horrific: we could help people living with certain diseases to manage and maybe curb their suffering or we could conceive "perfect" babies solely as organ donors for other humans. The range of these possibilities speaks to the uncertainty of the future of this science of genetics and the fear instilled in people to whom this progress seems out of control and irresponsible. This intersection of ethics and biology promises to be a great challenge to our society and our world.
The journey of decoding the DNA of the human genome (8) is rooted in our continuing scientific desire to understand more thoroughly the things that make up humans and how they affect who we become, what are lives are like, and how much our children inherit these traits. If we were able to more completely understand what makes up the human body, we could understand humans and their characteristics on a much more basic level. A race began years ago to complete the decoding of the human DNA structure.
This pace, though, has great impacts on how the research is received by the general public. Society, so far, hasn't been able to keep up with science's break neck pace, and concerns over the effects of this gap have surfaced. The impacts of a science with few clear ethical guidelines and boundaries pose a great threat to the society within which it functions. It is this fear of discontinuity between scientific practices and ethical concerns that has helped to spawn the discourse in popular journalism around the globe. The reactions from different groups around the world to the birth of Adam Nash (1) (the baby supposedly created to save his dying sister) were varied: A philosopher from England was quoted as saying "Adam Nash exists for the best of reasons. But he had set us on a journey whose destination we cannot see-- one which ought to fill is with foreboding" (9) (Griffiths). A French professor said that the Nash case could set a dangerous new precedent for a "new form of biological slavery" (9) (Griffiths). Adam's mother was quoted as saying it was simply "an added perk" that he would be able to help his dying sister, distancing herself from the idea of selecting the baby solely for his use to his sister (Grady).
In the Nash case (1) Adam was screened to make sure that he wasn't a carrier of the rare blood disease his sister has, but was also selected over the other fertilized eggs because he was the only one with tissue type that matched his sister's. This case brings up the future possibility of parents conceiving an additional child in order to help cure an existing one, by using this genetic selection process and claiming that they had always planned on having more children. Though doctors and scientists in the Nash case felt that Adam's birth was an "added bonus," there are few guidelines around the procedures and when they should be used.
Because the science of genetics has progressed as such a rapid rate, society hasn't been able to keep up with the necessary ethical limits it puts on science through legislation and social norms. Globally, it would be a breach of human rights, if not a crime, to kill someone to use their body for scientific experiment. Such ethical considerations around genetic selection have entered into societal discourse, but societal norms and laws have yet to be decided on because of the degree of disagreement among people and societies. People hold such differing views on these issues of selection and preferences that we have been unable to come to agreements on an international or national level (in the United States, at least).
One of the great concerns resulting from this lack of norms and laws is the fear that society will start to select only those babies who conform to the mainstream norms of society. The result of this could be a new tool of intolerance-- the possibility of "social prejudic[e]... being acted out on a family planning level" (Lehrman). These groups might start to be those babies carrying fatal genetic disorders but eventually progress to babies with Down's syndrome, learning disorders, darker skin, or an indication of homosexuality. This understandably makes many minority groups nervous. Sally Lehrman wrote an article (10) about a dialogue in which this fear was expressed:
"In a public dialogue on genetics policy in Michigan and Alabama... African American and Latino focus groups said they feared government and medical institutions would press parents to strive for the 'perfect' baby. Members felt that 'if we start going for the idea of a perfect model, we, communities of color, are probably not going to be included,' says Toby Citrin... 'It's not surprising coming out of communities of color-- the concept of a perfect model of a human being as opposed to valuing diversity and variation'" (Lehrman).
Lehrman's article also talks about the possibilities around this extending to those citizens who are disabled. If society can "cope" with the issue of disabled members of society by eliminating them, then the opportunity to understand and embrace differences among people and lives is lost.
In order to avoid this future, some basic guidelines at the international level must be drawn up, even if they are very limited. In addition, each country should engage in a dialogue to highlight cultural norms and create guidelines to address these issues. Some countries, like Great Britain, have started to do this, but there are still many who have not managed to address these problems as of yet. The United States has made piecework attempts at controlling this realm of science, but has yet to agree on more comprehensive measures. President Clinton issued an executive order (11) prohibiting discrimination in federal employment based on genetic information. The National Institutes of Health (12) have created studies, committees and commissions on bioethics, (13) and these have in turn produced recommendations, guidelines and suggestions. They stay at the level of suggestions, though, until the government tackles the problem.
It is this kind of disagreement and fragmentation that spawns fear in citizens and leaves the ethics of genetics up to scientists. Leaving this amount of discretion up to a group of people who have conflicting interests can only lead to a scientific course out of sync with cultural and ethical norms of our society. This course of science is too important to the path of our civilization to be treated in such a haphazard and undisciplined way. Future generations will be born out of these decisions and so they must be deliberate and conscientious.
Grady, Denise. "Baby Conceived to Provide Cell Transplant for His Dying Sister." http://www.nytimes.com/2000/10/04/science/04BLOO.html.
Griffiths, Lyndsay. "Baby Adam: Medical Wonder or Ethical Breach?" http://dailynews.yahoo.com/h/nm/20001004/sc/adam_ethics_dc_1.html.
Lehrman, Sally. "Prenatal Genetic Testing Spurs Fears of Eugenics: Steps Toward Accepting a Spectrum of Differences. http://geneletter.org/10-02-00/features/differences.html
1) New York Times article ,
2)Article on Death of 18 Year Old Boy,
3) Article on the race for mapping DNA,
4) Article on the human genome ,
5) BBC article,
6) Scientific American Article ,
7) Time Magazine site ,
8) New York Times section on the human genome ,
9) Baby Adam Article,
10) Lehrman article,
11) Executive Order against genetic discrimination,
12) NIH site,
13) NIH ethics site
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