What possible outcomes would justify a research project that will have the inevitable outcome of stigmatizing the subjects in a way that may result in serious restrictions on their personal freedom?
No possible outcome could really justify the research and labeling of newborns, but if the outcomes resulted in progression in scientific knowledge and the annihilation of diseases such as Down's syndrome and sickle cell it may be more accepted by society and some medical researcher.
Monday, March 30, 2009
Informed Consent
Many questions arise from how the principle of informed consent be interpreted when the subject of a research project is newborn infants. In The Lancet a study was published when researchers interviewed 200 parents of infants who had been asked for their informed consent. The researchers questioned the parents’ competence, information given, parental understanding, and how voluntary they were in their consent. Of the 200, 59 parents’ consents were correctly given, and the other parents lacked some of the components above. Most of the impaired consents were brought on because it was an emergency situation which weakened their judgment. All of the parents were very involved in the decision making process of their infants, and the doctors normally agreed with their decision. The researchers concluded that parents should be asked for their consent.
Friday, March 27, 2009
Denying Information Results
4. Under what circumstances is it ethical to deny human subjects of research projects information about the results of that research?
Telling a subject they have an extra chromosome can greatly affect the subject’s life. If the subject is informed they have an extra chromosome, which in the public is viewed to be criminally and socially unstable, they can change the way the act. They will see themselves as criminals and thus act like criminals. If they start to think they are not accepted in society, they will become depressed and distance themselves from society. Learning of someone’s faults can cause them to have a negative image by society. In conclusion, researchers should not reveal the results of the test because it could risk the way the individual and others viewed the subject.
Telling a subject they have an extra chromosome can greatly affect the subject’s life. If the subject is informed they have an extra chromosome, which in the public is viewed to be criminally and socially unstable, they can change the way the act. They will see themselves as criminals and thus act like criminals. If they start to think they are not accepted in society, they will become depressed and distance themselves from society. Learning of someone’s faults can cause them to have a negative image by society. In conclusion, researchers should not reveal the results of the test because it could risk the way the individual and others viewed the subject.
Ethical Research Project
3. Is it possible to design an ethical, valid research project aimed at establishing a genetic component for the predisposition to some socially unacceptable behavior?
In the past, when male infants were found to have an extra Y chromosome, they were stereotyped to be criminally unstable. The newborns were viewed by the public that they would live socially disabled lives. They became the subject of much criticism by individuals. However, the theory that XYY males have criminal and socially unacceptable behavior has proven to be false. It is now possible for these newborn males to be tested without being scrutinized by the public.
In the past, when male infants were found to have an extra Y chromosome, they were stereotyped to be criminally unstable. The newborns were viewed by the public that they would live socially disabled lives. They became the subject of much criticism by individuals. However, the theory that XYY males have criminal and socially unacceptable behavior has proven to be false. It is now possible for these newborn males to be tested without being scrutinized by the public.
Using genetic screening in the workplace
Using genetic screening in the workplace to decide which candidates are the best for the job would be considered unfair for several reasons. The candidates cannot help what their genes are and to discriminate against someone because of their genetics would be wrong. It isn’t ethical to use genetics as a basis for deciding eligibility for health care because once again, the person cannot change and did not choose their genetics.
Public representation
The public should be represented but only by a small, selective group. If the public were to be very involved in approving the research, chances are they would not understand most of what was going on and might make unethical decisions or complicate matters further. The public needs to be involved and give their opinions for the institutional review boards to consider, but the review boards should make the ultimate decision because they have been educated to handle situations with serious social or political consequences.
Thursday, March 26, 2009
Summary of Case
XYY Controversy
The XYY controversy started with the eugenics movement which is the study of or belief that there is a possibility of improving the qualities of the human population. Although this may sound like scientific progress, it was a frequent source of ethical discussions and questions. One problem was legally authorizing the project which was met with extreme criticism, including many questions of the morality of eugenics. The main reason for this was that the Nazis used eugenics in horrific ways, which resulted in a temporary halt in research of human genetics. By the 1960s, scientists began to experiment with human genetics again. Many supported the efforts to find explanations for a wide range of human “deficiencies”, such as Down-syndrome. There was a large growth of genetic engineering technologies and potential uses of the information. It was expanded through Human Genome Project, and it brought on more ethical issues. In 1961 the first case of the XYY chromosome was found, and many myths formed. For example, it was said that males with XYY were inclined to violent behavior. It was called the “criminal chromosome” because there were reports of serial killers that had the XYY chromosome. In the late 1960s, two researchers, Walzer and Gerald, began screening and testing newborn males with the XYY, and continued to study them throughout their life. This became a very controversial subject, and in 1974 a group led by an organization called Science for the People tried to get the research stopped. The organization claimed that the research was not essential, flawed, and they believed that it labeled the children as socially unwelcomed. However, the research was not stopped even with the help of the Harvard’s institutional review boards, so Science for the People went to the public press. This was successful, and the research was stopped.
The XYY controversy started with the eugenics movement which is the study of or belief that there is a possibility of improving the qualities of the human population. Although this may sound like scientific progress, it was a frequent source of ethical discussions and questions. One problem was legally authorizing the project which was met with extreme criticism, including many questions of the morality of eugenics. The main reason for this was that the Nazis used eugenics in horrific ways, which resulted in a temporary halt in research of human genetics. By the 1960s, scientists began to experiment with human genetics again. Many supported the efforts to find explanations for a wide range of human “deficiencies”, such as Down-syndrome. There was a large growth of genetic engineering technologies and potential uses of the information. It was expanded through Human Genome Project, and it brought on more ethical issues. In 1961 the first case of the XYY chromosome was found, and many myths formed. For example, it was said that males with XYY were inclined to violent behavior. It was called the “criminal chromosome” because there were reports of serial killers that had the XYY chromosome. In the late 1960s, two researchers, Walzer and Gerald, began screening and testing newborn males with the XYY, and continued to study them throughout their life. This became a very controversial subject, and in 1974 a group led by an organization called Science for the People tried to get the research stopped. The organization claimed that the research was not essential, flawed, and they believed that it labeled the children as socially unwelcomed. However, the research was not stopped even with the help of the Harvard’s institutional review boards, so Science for the People went to the public press. This was successful, and the research was stopped.
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