Chapter 12 : Genetics, Intervention, Control, and Research
|Section 3. Presentation of Issues.|
This section was organized, prepared and written by Mark Riddagh (SCCC, 2006) using Ronald Munson's Intervention and Reflection as a guide.
The Human Genome Project
Although the promise of such an undertaking was originally filled with great expectation (the ability to detect future diseases and genetic disorders early enough for effective intervention, the eradication of hereditary disease, the expanding of knowledge and improvements in therapies), the Human Genome Project was ultimately swimming with controversy. How could such a vast increase in knowledge be unwelcome? Just think of it, the prevention of genetic diseases that had previously been passed down from parent to child to grandchild from generation to generation, why would anyone be opposed to such a possibility?
The first conflict that comes to the lay-mind is the “playing God” angle. If we, as human beings, attempt to take control of genetics, are we not then stepping on the toes of the Almighty? What right do we have to establish who should be born and who should not? If a mother who carries the gene, as well as the combination of conditions that are known to cause Huntington’s disease for example, is discouraged from having a child because of her genetic makeup, is that an ethical position for researchers and physicians to adopt. Why should we be able to undermine the birth of a genetically challenged child? Isn’t that God’s job? Surprisingly, although such issues would indeed arise, as well as the entire cloning controversy, they were not the only dilemma surrounding the new understanding of the human genome and the resulting possibilities.
The unexpected conflict actually came from the new ability to test for genetically dangerous conditions. Such screening, although it would alert one to the presence of known genes and triggers that cause genetic disorders and diseases, proved to be a sore spot with much of the population. Many did not want to know about their possibility of future conditions that may indeed cause substantial suffering. Many believed that no good could come from knowing one’s future and in many cases, they were right. What’s the good of knowing if one can do nothing to off-set the manifestation? This is not the case for all genetics precursors however, and in many cases, early intervention can increase the effectiveness of treatment and even thwart certain disorders by avoiding environmental triggers.
In lieu of obtaining knowledge that one may not necessarily want, other conflicts arose when the potential for discrimination entered the debate. Issues concerning insurance and employment became real threats to those who would opt to have future genetic disorders identified. If hiring were to become dependent upon one’s genetic condition, many believed that such an action was blatant discrimination since many genetic conditions are racially sensitive. Additionally, how would an insurance company react to the knowledge that one future may very well contain expensive treatments?
So the controversy, although not initially expected, became apparent as the project moved forward. The more successful genetic researchers became, the greater the ethical dilemma in the eyes of the population. The complexities of the issue are staggeringly apparent in spite of the potential to prevent unnecessary suffering. It seems that suffering is not the only significant issue for everyone.
Expand Knowledge and Use the knowledge for therapy
Genetic Testing and Screening
knowledge is incomplete, indications of susceptibility
Possibility for Discrimination: Employment, insurance, social avoidance/stigma
screening children for defects, for risks, for liabilities Who decides? Who informs?
Gene Therapy: ADA, Parkinson's, Sickle-Cell, Malignant Melanoma, Leukemia, Cystic Fibrosis , etc...
Germ-Line Therapy: to eliminate heritable diseases from a family
Human Stem Cells: for repair or replacement. Grow tissues, organs, nerves
Huntington's Disease: Testing? Moral and social issues
gene defects, developmental defects, genetic carriers, genetic predisposition
Screening: pku, Sickle-Cell
Prenatal Genetic Diagnosis: amniocentesis, chorionic villus sample CVS, selective abortion
1. Is there a right to have children who are likely to be impaired/
2. Is society justified in requiring that people submit to genetic screening, counseling and prenatal diagnosis?
3. Do physicians have an obligation to inform their patients who are prospective parents about the kinds of genetic tests that are available?
4. Do patients have the right to be informed of all the results of a genetic test?
5. Should public funds be used to pay for genetic tests when an individual is unable to pay?
negative- to avoid undesirable traits or conditions
positive - to promote traits and conditions that are valued
Therapy: recombinant DNA, germ-line therapy
risks of new forms of life
Utilitarian ; concern for consequences
Kantian: autonomy, honesty
Ross: prima facie duties
Rawlsian: maxi min principles
Natural Law: promote life
Biospecimens, Research, and Consent (Bioethics Briefs) http://www.youtube.com/watch?v=68IVTs-tXhY
Genetics and Bioethics - Francis Collins http://www.youtube.com/watch?v=Kc_1Z9HPtH4
Bioethics Stem Cells and the New Biology http://www.youtube.com/watch?v=HkW0C-NyNtQ
Professor Charles Camosy http://www.youtube.com/watch?v=F4EsEB_-2yI
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© Copyright Philip A. Pecorino 2002. All Rights reserved.
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