The complete sequencing of the human genome in 2003 has opened doors for new approaches to health promotion, maintenance, and treatment. Genetic research is now leading to a better understanding of the genetic components of common diseases, such as cancer, diabetes, and stroke, and creating new, gene-based technologies for screening, prevention, diagnosis, and treatment of both rare and common diseases. Healthcare providers are on the forefront of care, and therefore will participate fully in genetic-based and genomic-based practice activities such as collecting family history, obtaining informed consent for genetic testing, and administering gene-based therapies. This new direction in healthcare calls for all healthcare providers to be able to effectively translate genetic and genomic information to patients with an understanding of associated ethical issues. Although these new directions raise hopes for disease prevention and treatment, they also bring challenging ethical issues to patients and healthcare providers alike. For example who should have access to genetic information? Who owns and controls it? How can families resolve conflicts when some members want to be tested for a genetic disorder and others do not? How does a person’s genetic information affect that individual and society’s perception of that individual? How does genetic and genomic information affect members of minority communities? In future the increased availability of personal genetic information will challenge healthcare providers to understand the ethical issues associated with activities such as informed decision making, informed consent and genetic testing, genetic and genomic research testing protection, maintaining privacy and confidentiality of genetic information, preventing genetic discrimination, and strengthening genetic and genomic care around the world. http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/ OJIN/TableofContents/vol132008/No1Jan08GeneticandGenomicHealthcare.aspx
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This very question with all its permutations is facing my extended family right now. I can provide perspective but not answer all the numerous questions you have. In my birth family, two of my sisters are dead of breast cancer and of the two, one of her two daughters currenetly has breast cancer and tested positive for the breast cancer gene while the other tests negative. I believe that genetic information, like any other health information, belongs to the person or family it affects. If one should choose to share this with a researcher or project, that should be their decision. No one should own or control someone else's genetic information. Families resolve conflicts over genetic testing, in my opinion, as they would any other, by each choosing their own path. If my sister wants to know about the gene and I do not, I see no reason for either of us to force the other into a different choice. Since genetic information about me and my family, where breast cancer and diabetes are prevalent, none of that information needs to be public; therefore, it does not have to affect society's view of me or my siblings. If the genetic information were to be Alzheimer's disease, that information will become obvious on its own. As one of my neices is married to an African man, their children may be affected in ways we don't know as his genetic information has not been tested in any way. I do believe health care professionals will need to be much more honest with patients in the informed consent decision making as I was never told for more that 15 years that every mammogram physician had written that I was not a good candidate for mammograms as nothing could be seen among the many cysts. Only when the second sister was diagnosed with cancer did they tell me the information I should have had long before. Armed with that information, I could make choices I was not aware of before. As health dollars tighten, this question is one we will all face because of how health dollars will be allocated. Health care directives will help make wishes clear about care, but genetic information should not be anyone's decision except the person to whom it belongs.
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