“I’ve got the gene for …”
Have you thought about genetic testing? Thought about finding out what might be in store for you? Would finding out something change the decisions you make? Change how you live your life?
Would knowing empower you or cripple you by casting a shadow over the rest of your life?
A “family decision”?
… because it’s not only about you. Testing yourself means testing your family; “Don’t you see? If your test is positive, it means I’ve got the gene, too. And I don’t want to know. I have a right not to know, don’t I?”
This genetic knowledge is also most likely to have a great impact on the choices to be made by those who are contemplating parenthood. Could decisions around fertility, and advanced in-vitro fertilization techniques, like preimplantation genetic diagnosis, “prune” genetic diseases from a family tree?
Diagnosis vs. Treatment.
These are the issues we face as scientists learn more about genetics…. the balance between knowing and not. What should be do with all this new information? Especially when genetic disease prediction continues to outpace medicine’s ability to treat or cure. For example, we have a genetic test for Huntington’s disease that can confirm a mutation, but it offers no treatment for the devastating symptoms. This leads to a therapeutic rift between what we know and what we can do.
What about socially and/or legally? What if the results might become public and cause exclusion from employers or insurers. Laws to prohibit discrimination of people with a history of genetic disorders are not yet completely in place.
Margaret R. McLean, director of Biotechnology and Health Care Ethics at the Markkula Center for Applied Ethics, offers the following questions to clarify some of the key issues facing medical genetics in the years to come;
1. What is the purpose of taking a particular genetic test? Who is affected by the results?
2. Who has control of genetic information?
3. What does it mean to offer genetic testing and/or therapy in the absence of universal access to health care?
4. On what basis should someone undertake genetic intervention such as genetic constructive surgery if and when it becomes available?
5. For what kind of genetic future are we planning?
… or improved resources?
… or can it lead to a wealth of research resources, like the story of 23 and me’s Anne Wojcicki and her husband (google founder) Sergei Brin. “Brin, who began donating to Parkinson’s research in 2005, accelerated that giving after he learned in 2008 he has a flawed gene (LRRK2) that presents him with a 50 percent chance of getting the disease by age 70. So far Brin has donated $132 million, mostly through the Michael J. Fox Foundation for Parkinson’s Research, to help create a DNA database of 7,000 patients and to support work on the first targeted treatments that aim at the genetic causes of the movement disorder.” (source)
Have you had genetic testing? Have you thought about it? What is most attractive about genetic testing to you? What is the biggest barrier? Please share your thought’s in the comments below! much love.