Comments on: Who Am I? http://ihckeeptalking.wordpress.com/2007/04/19/who-am-i/ Fri, 27 Nov 2009 12:28:27 +0000 http://wordpress.com/ hourly 1 By: Parth (Facilitator) http://ihckeeptalking.wordpress.com/2007/04/19/who-am-i/#comment-1060 Parth (Facilitator) Sun, 22 Apr 2007 18:22:39 +0000 http://ihckeeptalking.wordpress.com/2007/04/19/who-am-i/#comment-1060 Thank you for the comments, Greg. GINA will certainly advance the privacy of genetic information and allow people to participate in genetic research while maintaining the privacy of their genetic information. Another interested subject Dr. Williams touched on also revolves around this issue of genetic privacy. She mentioned that in the published report of the Jefferson/Hemings case, genetic research found that one of the children in the study had a paternity different from what they expected. This finding as irrelevant to the study, but was published. This shows something about genetics that is fundamentally different from other kinds of personal information - that genetic information can reveal data about the person who's genetic information it is, but also about that person's relatives. Here's a case example: Imagine a young man learns that the disease his father died of may have a genetic component. He tells his siblings about this and mentions that there is a genetic test that could show them if they carry a predisposition to this same disease. His siblings are strongly opposed to the idea and refuse to consider genetic testing. The young man decides that he still wants to get tested, and does so. Now imagine the genetics of the disease are such that if he carries the genetic predisposition, his siblings will as well. If he finds that he does have the genetic abnormality, should he reveal this information to his siblings? They've indicated that they don't want this information, but what if the man simply reveals his own findings - this would, to anyone who knows about the disease, reveal that his siblings also carry the marker. What if there is a cure for the disease, if caught early? The limits and boundaries of private genetic information and how to properly protect confidential information is still a complex and important topic for conversation. Parth IHC Facilitator Thank you for the comments, Greg. GINA will certainly advance the privacy of genetic information and allow people to participate in genetic research while maintaining the privacy of their genetic information.

Another interested subject Dr. Williams touched on also revolves around this issue of genetic privacy. She mentioned that in the published report of the Jefferson/Hemings case, genetic research found that one of the children in the study had a paternity different from what they expected. This finding as irrelevant to the study, but was published. This shows something about genetics that is fundamentally different from other kinds of personal information – that genetic information can reveal data about the person who’s genetic information it is, but also about that person’s relatives.

Here’s a case example: Imagine a young man learns that the disease his father died of may have a genetic component. He tells his siblings about this and mentions that there is a genetic test that could show them if they carry a predisposition to this same disease. His siblings are strongly opposed to the idea and refuse to consider genetic testing. The young man decides that he still wants to get tested, and does so. Now imagine the genetics of the disease are such that if he carries the genetic predisposition, his siblings will as well. If he finds that he does have the genetic abnormality, should he reveal this information to his siblings? They’ve indicated that they don’t want this information, but what if the man simply reveals his own findings – this would, to anyone who knows about the disease, reveal that his siblings also carry the marker. What if there is a cure for the disease, if caught early?

The limits and boundaries of private genetic information and how to properly protect confidential information is still a complex and important topic for conversation.

Parth
IHC Facilitator

]]> By: Greg http://ihckeeptalking.wordpress.com/2007/04/19/who-am-i/#comment-1012 Greg Fri, 20 Apr 2007 16:55:58 +0000 http://ihckeeptalking.wordpress.com/2007/04/19/who-am-i/#comment-1012 During Wednesday night's program "Who am I: Genetics and Identity", Dr. Williams touched briefly on the notion of ethics and confidentiality in research)Hemings/Jefferson case study), and several audience questions raised the issue of genetic confidentiality. I was surprised that none of the panelists mentioned a Federal bill that is currently being considered by Congress. The Genetic Information Non-Discrimination Act of 2007 (GINA) was recently voted on and passed by the Senate, and is now under review in the House of Representatives. This Act will help continue genetic research to potentially revolutionize health care and save lives, and protect the privacy of individuals participating in this research. GINA will establish basic protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies, without the fear that this information will be misused or abused. It is estimated that each of us have on average 6-8 disease producing genetic mutations, and anywhere from 10-40 gene mutations on the whole. Although most of us have probably never had a genetic test or plan to have one anytime soon, the rapidly developing field of genetics and health care could change our opinions about, or even our need for genetic testing in the very near future. It is therefore critical that people be aware of the fact that their genetic identity is private, and soon to be protected in ways that other aspects of identity already are. During Wednesday night’s program “Who am I: Genetics and Identity”, Dr. Williams touched briefly on the notion of ethics and confidentiality in research)Hemings/Jefferson case study), and several audience questions raised the issue of genetic confidentiality. I was surprised that none of the panelists mentioned a Federal bill that is currently being considered by Congress. The Genetic Information Non-Discrimination Act of 2007 (GINA) was recently voted on and passed by the Senate, and is now under review in the House of Representatives. This Act will help continue genetic research to potentially revolutionize health care and save lives, and protect the privacy of individuals participating in this research. GINA will establish basic protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies, without the fear that this information will be misused or abused. It is estimated that each of us have on average 6-8 disease producing genetic mutations, and anywhere from 10-40 gene mutations on the whole. Although most of us have probably never had a genetic test or plan to have one anytime soon, the rapidly developing field of genetics and health care could change our opinions about, or even our need for genetic testing in the very near future. It is therefore critical that people be aware of the fact that their genetic identity is private, and soon to be protected in ways that other aspects of identity already are.

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