Hi guys,
Sorry I didn't get the chance to meet you in person. However, I thank Dr.Oliver and you too for letting me do my report online and keep in touch with you. I decided to do my report on "ethical issues in genetic testing."
Why may Genetic Testing lead to Ethical Dilemmas?
Why is genetic information special?
Should the information be obtained if no treatment or intervention exists?
Discussions about ethics are important in many aspects of health care but are especially critical when the health care includes genetic testing. There are several aspects of genetic testing that may lead to ethical dilemmas (e.g., the limitations of what genetic testing can provide in specific clinical situations).
Genetic information is often considered exceptional when compared to other medical information about an individual for a number of reasons:
1-The shared nature and ownership of genetic information:individuals undergoing genetic testing have a responsibility to consider not only what it means for their own health, but also what the information may mean for their relatives, and their responsibilities towards those relatives.
2-Limitations of genetic testing:While in some cases, genetic tests provide reliable and accurate information on which people can make decisions, in other cases it may not be possible to obtain a definitive result. An individual is much more than the sum of their genes: the individual’s environment can modify the expression of genetic messages to the body and many health factors are not genetic.
3-Setting boundaries in applications of the genetics technology: Moral, religious and cultural beliefs underpin decision making by individuals, couples, families and communities and may challenge such boundaries.
After we saw how the genetic information is special, let's discuss the ethical dilemmas that may raise from the genetic testing.
1-Limitations of genetic testing:
Genetic testing creates important opportunities for assessment of genetic risk and diagnosis. However, some genetic tests do not identify all of the possible gene mutations that can cause a particular condition, or they have limited predictive value.[17] Because some genetic tests may not provide all the information that families may want, the test may subsequently require difficult decisions without providing full information. This can lead to uncertainties for patients and clinicians.
2-Undesired options after genetic testing:
Prenatal genetic screening is commonly used to identify pregnancies at high risk for birth defects, including neural tube defects and genetic conditions such as Down syndrome.
3-Uncertain Implications for Early Intervention:
Another growing clinical application of genetic testing is identification of the genetic contribution to risk for common diseases to guide early intervention and preventive care. Genetic testing for mutations in genes associated with hereditary breast/ovarian cancer is an example of a genetic test that can identify individuals who would benefit from individualized screening and prevention protocols based on their genetic susceptibility to breast and ovarian cancer.
Case To Study:
Huntington disease (HD) is a neurological degenerative disease that has an onset in most people between the ages of 30 and 50. There is no cure for this condition and it is progressive. Symptoms include deterioration in movement, cognition and generalised functioning. Death usually results from respiratory illness.
HD is an inherited condition. A child of an affected person has a 50% chance of inheriting the faulty gene that causes the condition. Genetic predictive testing is now available for persons over the age of 18 who have an affected parent or relative which will tell them in almost all cases whether they will develop the disease at some stage in their life.
Mr H. is a 25 year old man whose grandfather died some 10 years ago from Huntington disease. Mr H’s mother has therefore a 50% chance of developing HD. She decided to have the genetic test and has been shown to have the faulty gene. She will definitely develop HD at some time and Mr H is now at 50% chance of developing HD.
Mr H. is an air traffic controller. He loves his job and he feels he could perform his duties most adequately for many years, irrespective of whether he carries the faulty gene for HD or not. He does not wish to have the genetic test. His employer is unaware of his family history.
Questions and Dilemmas:
1-To know or not to know? When is the right time to decide to have predictive/presymptomatic testing?
2-Who actually ‘owns’ this information and who should decide who can access it?
3-What if the situation was reversed and Mr H wanted testing but his mother had refused? What responsibility is there to offer testing to an individual when the result may indirectly reveal the genetic status of a relative (if Mr H carries the HD gene fault then he must have inherited from his mother)?
References:
Ethical Issues With Genetic Testing in Pediatrics. June 2001, VOLUME 107 / ISSUE 6
Journal of Medical Ethics. Ethical issues in predictive genetic testing: a public health perspective.
http://www.medscape.com/viewarticle/505222_4
http://www.genetics.edu.au/Publications-and-Resources/Genetics-Fact-Sheets/FactSheetELSI
http://www.genomicslawreport.com/
Sorry I didn't get the chance to meet you in person. However, I thank Dr.Oliver and you too for letting me do my report online and keep in touch with you. I decided to do my report on "ethical issues in genetic testing."
Why may Genetic Testing lead to Ethical Dilemmas?
Why is genetic information special?
Should the information be obtained if no treatment or intervention exists?
Discussions about ethics are important in many aspects of health care but are especially critical when the health care includes genetic testing. There are several aspects of genetic testing that may lead to ethical dilemmas (e.g., the limitations of what genetic testing can provide in specific clinical situations).
Genetic information is often considered exceptional when compared to other medical information about an individual for a number of reasons:
1-The shared nature and ownership of genetic information:individuals undergoing genetic testing have a responsibility to consider not only what it means for their own health, but also what the information may mean for their relatives, and their responsibilities towards those relatives.
2-Limitations of genetic testing:While in some cases, genetic tests provide reliable and accurate information on which people can make decisions, in other cases it may not be possible to obtain a definitive result. An individual is much more than the sum of their genes: the individual’s environment can modify the expression of genetic messages to the body and many health factors are not genetic.
3-Setting boundaries in applications of the genetics technology: Moral, religious and cultural beliefs underpin decision making by individuals, couples, families and communities and may challenge such boundaries.
After we saw how the genetic information is special, let's discuss the ethical dilemmas that may raise from the genetic testing.
1-Limitations of genetic testing:
Genetic testing creates important opportunities for assessment of genetic risk and diagnosis. However, some genetic tests do not identify all of the possible gene mutations that can cause a particular condition, or they have limited predictive value.[17] Because some genetic tests may not provide all the information that families may want, the test may subsequently require difficult decisions without providing full information. This can lead to uncertainties for patients and clinicians.
2-Undesired options after genetic testing:
Prenatal genetic screening is commonly used to identify pregnancies at high risk for birth defects, including neural tube defects and genetic conditions such as Down syndrome.
3-Uncertain Implications for Early Intervention:
Another growing clinical application of genetic testing is identification of the genetic contribution to risk for common diseases to guide early intervention and preventive care. Genetic testing for mutations in genes associated with hereditary breast/ovarian cancer is an example of a genetic test that can identify individuals who would benefit from individualized screening and prevention protocols based on their genetic susceptibility to breast and ovarian cancer.
Case To Study:
Huntington disease (HD) is a neurological degenerative disease that has an onset in most people between the ages of 30 and 50. There is no cure for this condition and it is progressive. Symptoms include deterioration in movement, cognition and generalised functioning. Death usually results from respiratory illness.
HD is an inherited condition. A child of an affected person has a 50% chance of inheriting the faulty gene that causes the condition. Genetic predictive testing is now available for persons over the age of 18 who have an affected parent or relative which will tell them in almost all cases whether they will develop the disease at some stage in their life.
Mr H. is a 25 year old man whose grandfather died some 10 years ago from Huntington disease. Mr H’s mother has therefore a 50% chance of developing HD. She decided to have the genetic test and has been shown to have the faulty gene. She will definitely develop HD at some time and Mr H is now at 50% chance of developing HD.
Mr H. is an air traffic controller. He loves his job and he feels he could perform his duties most adequately for many years, irrespective of whether he carries the faulty gene for HD or not. He does not wish to have the genetic test. His employer is unaware of his family history.
Questions and Dilemmas:
1-To know or not to know? When is the right time to decide to have predictive/presymptomatic testing?
2-Who actually ‘owns’ this information and who should decide who can access it?
3-What if the situation was reversed and Mr H wanted testing but his mother had refused? What responsibility is there to offer testing to an individual when the result may indirectly reveal the genetic status of a relative (if Mr H carries the HD gene fault then he must have inherited from his mother)?
References:
Ethical Issues With Genetic Testing in Pediatrics. June 2001, VOLUME 107 / ISSUE 6
Journal of Medical Ethics. Ethical issues in predictive genetic testing: a public health perspective.
http://www.medscape.com/viewarticle/505222_4
http://www.genetics.edu.au/Publications-and-Resources/Genetics-Fact-Sheets/FactSheetELSI
http://www.genomicslawreport.com/
Thanks, Michael. Our door is open, if you ever have an opportunity to join us.
ReplyDeleteMy biggest ethical concern with genetic testing is that we'll lose control of our own genetic information and it will be used for discriminatory purposes. Also, that we'll tend to be intimidated and overly influenced by the language of "50% chance" etc.
If you're interested in continuing your research & reporting on this topic, you may want to take a look at "The Gene: An Intimate History" (Mukherjee)
Thanks Dr. Oliver for that source (Mukherjee). I am going to keep my search on it.
ReplyDelete