As what Campbell mentioned that without conducted scientific research the whole enterprise of bioethics would be a waste of time. Research must always be high quality in order to produce knowledge that is applicable outside of the research setting with implications that go beyond the group that has participated in the research. Furthermore, the results of your study should have implications for policy and project implementation. Unfortunately, not all researchers and scientists abide by the principle that the truth shall be told all the time (C. P. Snow). For instance, the dishonesty of the South Korean stem cell researcher Hwang Woo-suk. In 2004-2005 he published claims that he had succeeded in creating the first cloned human embryo and had derived a stem cell line from it. These claims were shown to be totally false.
What I am trying to say is that research is something that really important to any type of studies. Research is the systematic investigation and study of materials and sources to establish facts and reach new conclusions, so it shapes people's understanding of the world around them. Through research findings, psychologists, sociologists and scientists are able to explain individuals' behaviors, including how people think and act in certain ways.
Campbell discussed four types of research: clinical trails, the use of animals in medical research, genetic research, and epidemiological research.
Genetic Research:
Can bioethics ever represent too much of a good thing? Where exactly is the line between too little and too much protection for patients in genetic counseling, research, and testing?
To better understand the potential impact of paternalism, consider the case of Joy Simha. Simha successfully battled breast cancer in the mid-1990s, and in 1996, she chose to take a genetic test to determine whether she carried the breast cancer gene BRCA1. Simha knew that having the gene would increase her chances of future breast or ovarian cancer by about 50%, so she decided that if the test was positive, she would have her remaining breast removed as a means of cancer prevention. Simha's doctors, however, refused to give her the results of the test. In doing so, the doctors were following guidelines recommended by prominent bioethics authorities at the time, which stated that the outcome of a genetic test should not be divulged to a patient if a clear treatment was not available. The aim of this recommendation was to prevent patients from experiencing undue stress if diagnosed with an untreatable condition.
Paternalism is not just a factor in the rights of individuals who wish to undergo genetic testing; it can also hinder genetic research. Recently, the number of studies aimed at correlating genetic status with disease vulnerability has increased, and simultaneously, so have concerns regarding participation in this research, because such participation could create the risk of genetic discrimination and emotional distress. Typically, bioethicists concentrate on determining whether the existing protection of human subjects in genetic studies is adequate, instead of whether research data will be compromised if stronger protective guidelines are implemented (Reilly et al., 1997; Wilcox et al., 1999).
References:
Alastair V. Campbell. Bioethics. The Basics. By Routledge. P 116-120
What I am trying to say is that research is something that really important to any type of studies. Research is the systematic investigation and study of materials and sources to establish facts and reach new conclusions, so it shapes people's understanding of the world around them. Through research findings, psychologists, sociologists and scientists are able to explain individuals' behaviors, including how people think and act in certain ways.
Campbell discussed four types of research: clinical trails, the use of animals in medical research, genetic research, and epidemiological research.
Genetic Research:
Can bioethics ever represent too much of a good thing? Where exactly is the line between too little and too much protection for patients in genetic counseling, research, and testing?
To better understand the potential impact of paternalism, consider the case of Joy Simha. Simha successfully battled breast cancer in the mid-1990s, and in 1996, she chose to take a genetic test to determine whether she carried the breast cancer gene BRCA1. Simha knew that having the gene would increase her chances of future breast or ovarian cancer by about 50%, so she decided that if the test was positive, she would have her remaining breast removed as a means of cancer prevention. Simha's doctors, however, refused to give her the results of the test. In doing so, the doctors were following guidelines recommended by prominent bioethics authorities at the time, which stated that the outcome of a genetic test should not be divulged to a patient if a clear treatment was not available. The aim of this recommendation was to prevent patients from experiencing undue stress if diagnosed with an untreatable condition.
Paternalism is not just a factor in the rights of individuals who wish to undergo genetic testing; it can also hinder genetic research. Recently, the number of studies aimed at correlating genetic status with disease vulnerability has increased, and simultaneously, so have concerns regarding participation in this research, because such participation could create the risk of genetic discrimination and emotional distress. Typically, bioethicists concentrate on determining whether the existing protection of human subjects in genetic studies is adequate, instead of whether research data will be compromised if stronger protective guidelines are implemented (Reilly et al., 1997; Wilcox et al., 1999).
References:
Alastair V. Campbell. Bioethics. The Basics. By Routledge. P 116-120
Bailey, R. Warning: Bioethics may be hazardous to your health. Reason, August/September, http://www.reason.com/news/show/31104.html (1999)
Reilly, P. R., et al. Ethical issues in genetic research: Disclosure and informed consent. Nature Genetics 15, 16–20 (1997) (link to article)
Wilcox, A. J., et al. (1999). Genetic determinism and the overprotection of human subjects. Nature Genetics 21, 362 (1999) (link to article)
Thanks, Michael. I understand your point, which the philosopher C.S. Peirce summarized as: "Don't block the road of inquiry." Protect patients' rights but...
ReplyDeleteIt's just hard to fill out that sentence in a way that supports robust research while fully guarding against the potential exploitation and abuse of research subjects. And that's why this is such an important topic for bioethicists to tackle.