Saturday, March 1, 2014

Our Family History

TAG of the Week:


Read this piece by the American Cancer Society entitled “Genetic Testing for Cancer: What You Need to Know”.


Given the increased awareness of genetic components/factors that predispose or cause diseases and/or conditions, do you believe it is imperative to know your family’s genetic history? Also, should public (i.e. Medicaid and/or Medicare) or private insurers provide genetic testing and counseling to their customers? Finally, if you had the opportunity, free of charge, would you participate in genetic testing and subsequent counseling?

OR


1. You can share the new, 'surprising' information you learned
2. Ask a question that needs additional clarification,
3. Share a news link relevant to the discussion. 
4. Reply to another student's comment.

40 comments:

  1. Although there has been increased awareness of genetic predispositions for disease and other conditions, I do not think it is imperative to know your family’s genetic history. The only reason an individual should feel obligated to discover their genetic history is if there is a familial mutation and members within their close family have died or been afflicted by a conditions resulting from this specific mutation. In regards to public and private insurance covering the cost of genetic testing for everyone, I believe this service should only be offered to the few “high risk” cases. In other words, I do not think insurers should have to provide coverage for those who do not meet the criteria of being high risk due to the outrageous cost of genetic tests.

    I strongly believe there should be additional laws passed to shield genetic information from insurers when considering life, disability, and long-term care insurances. At current, GINA does not restrict the use of genetic information in these instances and I believe this is, in a sense, punishing those who underwent a genetic test because their situation desperately warranted one.

    If given the opportunity to take a genetic test free of charge, I would not do so because of the lack of regulation surrounding my results. If I was absolutely certain that my results would not be used against me in the future by insurance companies and that these results would remain confidential, I would seize the opportunity. However, right now I would not be open to participating because I would be too skeptical of how and if my results could impact my life (i.e. insurance costs and availability) in the future.

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  2. Although I do not think it is absolutely imperative for everyone to know your family's genetic history, I do feel that it is important for people to be aware of their families medical history. For example, if there have been many genetically linked mortalities/morbidities in a family, this might be a case where knowing your family's genetic history might be important to your health. But, if this is not an issue, as Kendra pointed out-- it is extremely important to put a focus on your own controllable health by practicing good lifestyle habits, rather than getting caught up with genetic family history. I do not believe that insurers should be obligated to provide genetic testing and counseling to all of their counselors, but it might be nice if they would provide it to people who meet certain qualifications like have a vast family history of genetic morbidity/mortality. I really can't say if I would take advantage of free genetic testing and counseling if it was offered to me, but as of now, I like to focus on the health that I have control over.

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  3. I also do not think it is of the utmost importance to know your family's genetic history. I think that even with increased awareness of genetic predispositions, there is still too much confusion and misunderstanding over genetic testing results. Even today, there would still be overestimation what someone's great-grandmother's risk for a disorder meant for them. I think that it is important, conversely, for individuals to get their own individual genetic testing and visit trained counselors if they see fit to further examine the genetic factors and/or risk they might have. Also, as discussed in this week's reading, I think family history obtained by a physician is always important because it shows what disorders actually manifest in a family. In addition, knowing that your family has an increased risk for some disorder may lead to an important case in which genetic testing is inherently necessary for an individual to find out exactly what her own risk is.

    With that being said, I think both public and private insurers should only provide genetic counseling and testing if the patient is proven to be at high risk for a disorder already, from family history and/or behavioral factors. That way, the genetic testing will be done only in addition in order to get a clearer picture of true, immediate risk. I do not think every patient should be able to get genetic testing and counseling free of charge, because in a large amount of cases, it is not necessary.

    I do not think I would take advantage of free genetic testing right now. Learning about all the genes that make up my genome would be interesting, and I know that GINA would protect me from being discriminated against in some ways. However, I don't think genetic tests are very necessary for me right now, and I do not want my risk for some disorder to be overcalculated, and stress my family and myself out.

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  4. I do not believe it is necessary to know your family genetic history. For some individuals this can lead to a feeling of helplessness and lack of control over their individual future or destiny. Knowing medical history is important in order to determine how you can lessen risk factors of genetic disease and stay healthy/lead an active lifestyle that prevents problems. I agree with Tessa that GINA needs to be amended to include long term care insurance etc to protect the long term consequences that can currently arise from getting genetic tests. Knowledge is power but knowledge can also be intimidating and stop people from living their every day lives due to a genetic factor their great grandmother had. It is important to not become debilitated over information but lead a lifestyle armed with knowledge to prevent disease

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  5. I do believe with Anika and my other classmates that genetic testing is not crucial and important for those with family history and a predisposition for a certain. The article provided above also suggests genetic testing for those you have had cancer previously or are exposed to certain risk factors. I definitely agree with this and like how this article seeks to inform individuals about genetic testing so they can decide it is something they are comfortable with. I think that is key. Genetic tests should be taken lightly. The information can be beneficial and express your risk for disease but there are often many, as the article discusses, drawbacks to the tests. One important drawback proves that the tests precise, they estimate your risk. Just because you test positively for the mutation does not mean you will get the disease. That being said I believe that education is key before receiving a genetic test. My last thought is will genetic testing lead to behavior change in people? or lead to intense worry and distress among test-takers? These two factors should be considered among patients before taking genetic tests. Patient's should ask themselves - if I test positive for a certain mutation am I prepared and ready to make changes in my life? For these reasons, right now I would not get a genetic test done as of now. I do not know if genetic test results would be enough for me, as a 20 year old, to make drastic changes to my lifestyle to prevent for a disease that would affect me years down the road.

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  6. I do not think that it is imperative to know your family’s genetic history. It is important to know your family medical history, and if there is a history of a certain disease that is genetically linked then it might be important to get genetic testing. However, I think that people should be focused on living a healthy lifestyle to mitigate their risks for many different diseases. I think that public and private insurers could provide genetic testing and counseling to their customers, but maybe only if there is sufficient evidence that the test is necessary. Otherwise, the tests would probably be overused, and would lead to a lot of unnecessary stress and procedures. I am not sure if I would want to participate in genetic testing and counseling. I would have to fully investigate my family history, talk with my family, and do more specific research on the conditions that I would be testing for.

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    Replies
    1. Lindsay, I do agree with you on most points. Determining if a person is in need of genetic testing coverage based upon their family history would definitely not be easy for everyone. What if somebody is adopted, or even if one of their parents were adopted, and they have limited knowledge of their family history? How could it even be evaluated if genetic testing is "necessary", if it is based off of family history alone. And also sporadic inheritance patterns do raise another issue as far as basing genetic testing eligibility off of family history only, like you said. I do also agree that covering genetic testing could be a good preventative measure in health care (although at the moment US health care coverage isn't too concerned with preventative medicine, sadly).
      However, I can see why people would turn down a free genetic test. Besides privacy and confidentiality risks, which are important, there is a lot more to it than just knowing "if anything runs in your family". Everyone handles situations differently and holds different values. For example, to Joanna in "In the Family", it is devastating to her that if she takes the "necessary steps at a young age to live as long as possible" such as preventative surgery, she may never have children. However, to another woman this may not be as important to her.
      Everyone has varying levels of anxiety and fear. If two different people were to receive the same results, one may be emotionally fine and another may be debilitated by the news. Quality of life, not just length (or quantity) of life post-testing is an important consideration that needs to be kept in mind when deciding upon whether to receive a test.

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  7. The FDA is currently in hearings deciding whether “3-person embryo fertilization,” should be allowed. This technique combines DNA from two women and one man. Unfertilized eggs from the two women are combined to “weed out inherited genetic disorders contained in one woman’s DNA.” The safety of this technique has not been determined long-term but has been successfully performed on several monkeys. While the potential benefits may be huge, there are many ethical and social implications, most regarding fear of creating ‘designer babies.’

    In the video “In the Family,” that we watched today in class, one of the women says at one point that “there must be some other way to deal with breast cancer than to just remove body parts.” This got me to thinking about ways to prevent inheritance of the mutation, and thus, the possibility of women with the BRCA1/2 mutations using 3-person embryo fertilization to avoid doing so. While this technique is new and is not likely to be used on the public anytime soon (the FDA is currently discussing how to test it on humans in clinical trials), it is exciting to think the amount of cancer cases that could be prevented if such a procedure could be used.

    Sources:
    http://news.health.com/2014/02/25/fda-explores-3-person-embryo-fertilization/
    http://www.businessweek.com/ap/2014-02-25/fda-weighs-unknowns-of-3-person-embryo-technique

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  8. Given the increased awareness of genetic components/factors that predispose or cause diseases and/or conditions, I do not believe it is imperative for everyone to know their families genetic history. I believe that exceptions could be made for families that have a certain mutation or disease that has been a recurring problem in their family. If a family member knows through genetic testing their risk of a certain disease, this could inspire them to take action to help prevent it and to change their behavior. In general though, I do not believe it is imperative for every family.

    In regards to insurers providing genetic testing and counseling to their customers, I am still not exactly sure how I feel. In families that have a history of a mutation, I feel like they should provide testing. If a test comes back positive, I then think that the insurer has the responsibility of covering genetic counseling. However, I do not believe insurers should offer testing free for all of their clients, only those who have already demonstrated risk. This will save money in the healthcare sector and save fears. If someone who does not have a clear family history wants to undergo genetic testing, I think that right now they should have to pay for that. Maybe in the future, when genetic tests are extremely mainstream, simplified and cheap they could be completely covered by insurers, but not right now.

    If I had the opportunity to participate in testing and counseling free of charge, I think I would. Firstly, this class has gotten me very interested and curious about my own genes. Second, I know that Alzheimers runs in my family, so I'd be curious to see my own risk.

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  9. While I don't think that is is absolutely imperative to know your family genetic history, I think it would be smart to be aware of it. Like the movie we watched in class today, many women basically erase their chances of developing breast and ovarian cancer if they know they carry the BRCA1 mutation and have surgery to remove possibly affected organs. While this is certainly not the course of action every will want to take, we know that monitoring and constantly testing individuals with elevated risks can catch cancer early and improve the chances of ones survival.
    Like many of my classmates have already said, managing your environmental exposures is critical in reducing your risk of developing disease and just because you don't have a serious mutation doesn't mean you won't get that disease; likewise, just because you might have a mutation doesn't mean you will develop the disease. The movie described this well in terms of the BRCA1 gene in that the mutation affects one chromosome and that your other, healthy copy of the same chromosome can protect you. If the healthy chromosome is damaged, your risk of developing cancer increases greatly. In this case, knowing your family genetic history can be very useful because you know that you need to take certain precautions and avoid certain environmental exposures to protect your healthy chromosome.
    I believe that public and private insurers should allow their customers to have access to genetic testing and counselors, though I'm not entirely sure whose responsibility it is to pay for such testing and counseling; I think that probably lies with the customer.
    If I had the opportunity to participate in free screening and counseling, I'm not sure I would participate, at least not right now. Though being aware of possible risks is important, I don't think I would want to know if I had a mutation that could possible lead to cancer or another disease right now; I feel like that would be very stressful and worrisome, and that that knowledge that I could develop a disease would just mess with my head and make me stress out more than necessary.

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  10. I do not believe that it is imperative for everyone to know their families' genetic histories. Genetic testing should be an option for people who understand that they are genetically at risk for a hereditary mutation that can cause them harm. However, I believe that it is up to the individual to become informed and make that decision for themselves. In a family that is predisposed to a certain treatable disease, it may be a good idea to get tested so that you can combat the illness. But, for families that may have a predisposition to a non-treatable disease, it may not be worth knowing something that they won't be able to prevent.
    I believe that private insurance should cover genetic testing and counseling as preventative care if it is recommended by a primary care physician.
    If given the opportunity, I don't think I would receive genetic testing at this time. I am unaware of any serious preventative genetic disorders in my family that would warrant screening. I feel that at this time, genetic testing would only serve to scare me, and not actually be helpful in preventing disease. However, I am open to future genetic tests as I get older and if it becomes apparent that any certain types of disease or cancer are common in my family.

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  11. Although I do not believe it is imperative to know your family's genetic history, I think it is very valuable information, and there are immense benefits of that knowledge. If you know you have a family history of a certain disease, you can make lifestyle changes to decrease your risk of developing that disease. Genetic and medical history is also a huge factor in deciding whether or not to get genetic testing, which can be costly and unnecessary. For example, the woman in the film we watched knew that ovarian and breast cancer ran in her family, so she decided to get tested for BRCA1/BRCA2, and as a result she now knows she is positive for that gene and can have more frequent screening for breast and ovarian cancer.

    I think insurance companies should at least partially cover genetic testing as preventative care. Not only is it good for the subscriber, but it can also save them a lot of money. If someone found out they were positive for a gene that put them at a higher risk of developing a disease, they could make lifestyle changes to decrease their risk of developing that disease, and hopefully if they are effective they would never develop that disease, and the cost of the test would be much lower than the cost of treatment. Also, if say someone knew they were positive for BRCA1 they could get more frequent mammograms and ovarian cancer screenings, resulting in catching it earlier, so it could be treated earlier, which is more likely to be successful and shorter, which would save the insurance companies money. Catching the cancer earlier would also make it less likely to spread to other parts of the body that would require additional treatment. I think if the patient has a family medical history of a genetic disease than the genetic testing should be covered in full because it is more necessary and cost effective.

    I am torn between whether or not I would get a genetic test. Like I said earlier, I think it offers some very valuable information, but right now under GINA I don't feel safe having my genetic info available. If I could keep it completely confidential, I totally would take a genetic test, but GINA does nothing to prohibit discrimination in life insurance, disability insurance, long-term care insurance, or any of the other possible uses of genetic information besides employer and health insurance privacy.

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  12. I agree with some of the above comments that knowing you were not more susceptible for diseases would might give a false sense of security and lead to discontinuation of healthy lifestyle habits. However, I disagree that this alone should prevent people from getting genetic testing and finding out their family's genetic history. With some genetic mutations (ie. breast and ovarian cancer from the movie in class), there are options if you find you are genetically more susceptible for a disease. Just knowing that you might have a mutation making you more susceptible might cause as much stress as finding out that you do have the mutation, so I don't think that being tested and getting positive results causes more anxiety in this case. I actually think it could cause less anxiety, because instead of fear of not knowing, you may have other options to explore to decrease your risk. The woman in the movie was so worried about her mutation, but at least she knows she has options that would lower her risk, and the decision is just whether she takes that chance or not.

    If I had the opportunity to have genetic testing, free of charge, I probably would not take it. If I had a family history of breast cancer, ovarian cancer, etc., my answer might have been different. If I was in that situation, I think I would want to know my risk so that, if necessary, I would have the option to take proactive steps in reducing my risk.

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  13. I agree with some people above in that I do not believe it is crucial for everyone to undergo genetic testing. However, I do think it would be beneficial if everyone was fully educated and informed about genetic testing and about the risks and benefits associated with genetic testing. After educating the public, I believe that it would be up to the individual when deciding whether or not they want to undergo a genetic test. Also, after being fully informed about genetic tests, I believe it should be up to the individual about whether or not they want to know about their families genetic history. Therefore, I do not think it would be imperative to undergo genetic testing, but I think it is crucial to educate and inform the public about the risks and benefits of genetic testing and let people make a decision for themselves.

    I also can see the point that the other classmates are making about the possibility that knowing you aren't more susceptible to a disease may make them feel like its okay if they make unhealthy choices. However, I also feel this would be the individuals choice. I think this would also be crucial for a doctor or a genetic counselor to stress that just because you are not genetically susceptible, doesn't rule out the fact that your lifestyle could influence your susceptibility to the disease. If the individual is fully aware of the consequences of their lifestyle and choices, then I feel it is their individual choice on whether or not to continue making these unhealthy choices.

    I think it would be nice if Public programs such as Medicare and Medicaid and private insurers covered genetic testing because maybe people who really want to do it but cannot afford it would then be provided the opportunity of doing so. However, I feel that there are many other crucial areas that both public programs and private insurers have trouble covering now that, in order to cover genetic testing, there would probably need to be some rationing of some health services already covered. It would be great if those programs did cover the genetic test, but our country has such conflicts over covering medications and basic health care services that I feel those would need to be addressed first before we cover genetic testing.

    If I had the opportunity to have genetic testing free of charge, I probably would take it just because I am curious and it could be beneficial to know. But if it was not free of charge, I wouldn't be as ready to try have it done at this time.

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  14. I do believe that it is important for one to know his/her family's genetic history. Knowing which diseases "run" in the family is important for lifestyle choices and can be crucial in making healthcare decisions. However such information may need to be discussed by families along with a genetic counselor, who can explain genetic testing and the benefits and possible drawbacks of undergoing genetic testing. While knowing about possible disease could increase the anxiety of family members, it is important for them to know that they could possibly have the disease and what they can do about it, instead of letting the disease run its course and being oblivious to the cause.
    Public and Private insurers should cover genetic testing if there is a strong indicator of a disease in a person's family genetic history. Unfortunately, current methods of genetic testing are costly, which could possibly eat up entire health programs' budgets if they could cover every single genetic test.
    If I had the opportunity to undergo genetic testing and counseling free of charge, I would probably do so. I am interested in seeing what mutated genes I possibly carry and would find the information useful in making lifestyle choices.

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  15. Now that the scientific technology to find out who is genetically predisposed to this or that disease, it would be a waste of all those years of efforts to withhold that technology from the public. Anything we do should be thought about how it can be used by the general public. Especially for the purpose of science, it would be selfish to withhold new information form the public. Therefore, it would be years of waste if all the new genetic information is not applied on how it can be used to benefit the general public. Aside from that, it is also important for everyone to know what they are genetically predisposed to. However, this needs to be in conjunction with appointments with genetic counselors so people will understand what their results means.

    Similar to newborn screening, there needs to be a list of diseases that will benefit everyone. These diseases need to be easily prevented/ not easily provoked, treatable, and better to be dealt with earlier. These diseases should be provided for free to be screened, along with genetic counselors. However, for diseases that are less common among the population, there should be an affordable premium on those given the infrequency but it would still be available to the population, regardless of one's respective health insurance.

    If I had the opportunity to participate in genetic testing and counseling for free, I would absolutely do it as a prophylactic test. Similar to opening pandora's box, there will be unavoidable psychological side effects when one participates in genetic testing. I want to know what I am susceptible to, so I can change my habits accordingly. There will always be in the back of my head that I am, for example, susceptible to brain cancer. Therefore from then on I will be paranoid that every headache, regardless of how minor it is, I will be wary of a prospective brain tumor. However, I would rather be prepared for something than be blind-sighted.

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  16. I don’t think it is imperative to know your family’s genetic history. Personally, I am interested; however I don’t think it should be mandatory to know. Everyone should have the choice to learn their family’s genetic history for their own interest; whether it is curiosity on what they are at higher risk for, to learn more about their genes, to make healthier lifestyle choices, etc.

    I don’t believe public or private insurers should provide genetic counseling and testing to all of their patients, however I do believe there should be a guideline for those who they should provide it for, such as the high risk patients who have a previous family history.

    Given the opportunity, I would participate in free genetic testing and subsequent counseling. As I mentioned before, I am interested in knowing my family genetic history, although I would take the results with caution as we know it is not 100% conclusive on what will happen.

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  17. For me, I feel like my environment or family situation I am in would affect my decision to know my family's genetic history. Meaning, if my parents, aunts/uncles, and grandparents had all passed away at an early age due to the same or similar disease, I feel this would definitely affect my decision in knowing my family's genetic history and what I am at risk for. However, if a family member were to have had a disease but survived/overcame it, this would lessen my interest in knowing my family's genetic history. Not to say that one family member is not important in making my decision, but it would persuade me more and give me a bigger reason to know what diseases are running through my family and what disease I may be at risk for since more than one family member was affected. Because if it was more than one, there is an increased chance of what might have been passed down to me.

    Also, I do not believe that if one gets to know their genetic history and finds out that they are positive or at risk for a certain disease, that only then should they start making the right decisions. (i.e. eating right&exercise). I think that these should be steps we should take even before we find out our family's genetic history.

    In regards to the public/private insurers question, I am unsure whether they should provide their customers with genetic testing and counseling since my family would affect my decision in getting one. And if I had the opportunity of free genetic testing and counseling, as of now, I probably would not. First, I think the tests need to come out with more accurate results. In the video (In The Family Video), Joanna went to get results from different physicians on her chances of getting the cancer, and the fact all the numbers were all different somewhat shocked me and also scared me. Although they were all high numbers, I believe running from 80-95%, the fact that all these number were different, I wouldn't fully trust what the genetic test has to say. And back when we talked about the four big companies all resulting in different results, I'd say that if the tests were much more accurate, I would take the genetic test.

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  18. While knowing your family’s genetic history can be very beneficial, I don’t think it’s necessary imperative for everyone to know. People who have a family history of an inheritable disease that has testing available for it should consider testing, but for everyone else, genetic testing might not be useful. Genetic testing is expensive, and I think that insurance companies should cover or partially cover the costs for only people who are at risk for an inheritable disease.

    If I had the opportunity, I would participate in genetic testing. I don’t know much about my family’s history so I don’t know if I’m at risk for anything. The results of the genetic test, while not absolute, I think it still will be useful to know.

    This article looks at China’s large genetic testing market and how the government intervened to try cut back on the amount of testing performed. I thought it was interesting how big genetic testing is in China.
    http://www.forbes.com/sites/shuchingjeanchen/2014/03/03/china-cracks-down-on-dna-testing-2/

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  19. I think that it is important to know whether or not you are at risk for certain diseases or mutations. Genetic mutations are hereditary and provide a good indication of whether or not one should consider genetic testing. I believe that if someone knows they are high risk for a disease, it would be in their best interests to get tested in order to modify their lifestyle and reduce any risks. I think that individuals should take family history into consideration when deciding whether or not to have a genetic test. This being said, I think that genetic tests are not fully necessary for those who do not have reason to believe they are at risk for something.

    As the article mentions, for some who might know they are at risk, genetic testing could be a relief or provide direction on how to prolong a healthy life. I do not feel that insurance needs to be mandated to provide coverage for all patients. However, I do believe that those with strong family histories should have the option of knowing and modifying lifestyle/taking any preventative measures that may be beneficial. Therefore, insurance could cover partial to all of genetic tests for those who may benefit substantially from early diagnosis or treatment. I also feel that those who are not able to know their family histories should have free access to family records to find out if their genetic history includes any diseases or mutations.

    The article “Genetics and medicalization” (http://www.jstor.org/stable/pdfplus/25227979.pdf?&acceptTC=true&jpdConfirm=true) made a comment that stuck out to me, stating “Inflated perceptions of the value of specific genetic tests could drive a wave of inappropriate medicalization.” This makes me believe that before genetic testing is widely available, education on the true benefits of genetic testing and who would most benefit is something the general public should know before they are marketed as an easy test. People need to know exactly what these tests are for, and not rely on them as means of diagnosing themselves. This article brought up some thought-provoking ideas about genetic testing.

    I, personally, would not participate in genetic testing right now. My family has never had any cases of genetic diseases. I live a healthy and happy life, and feel that any testing would just cause anxiety and worry to myself. However, if I did have a family history of something, I probably would get it done so I could monitor my habits accordingly.

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  20. In my opinion, I don't think that any major conclusions regarding our family history should be made, I do think it is good to know what you may be predisposed to as a result of your genetic history. This can help shape the way we live our lives to help decrease any potential risks of disease that may be prevalent through our familial genetics. I also believe that physicians and health professionals should forewarn patients in telling them that they're not guaranteed developing the particular disease, to prevent paranoia and distress over what may be found in their family history. It should merely be used as a source to implement guidelines and measures towards prevention.

    I also definitely think that insurances should cover genetic testing and counseling because many people may be wary to get genetic tests because of the costs which can lead them to not knowing whether they're carriers of certain diseases or not. It would also potentially save a lot of money for both parties. If an individual becomes aware of their risk for a disease as a result of their genetic test, they may be more inclined to want to change the way they live, which could limit the medical procedures they would need to have down the road. It would be beneficial all around, in my perspective.

    If I were ever offered the opportunity to get genetic testing for free, I would definitely do so. If I knew that I had a higher chance of developing a certain disease because of my family history, I would definitely make the changes necessary to prevent that from happening. I do think the process and the results may make me a bit anxious at first, I believe it is better to know what you're at risk for rather than have it jump at you without knowing.

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  21. I do not think it is imperative to know your family history even though many genetic factors predispose individuals to certain diseases and conditions. I think that if you know that a disease runs in your family, then you might want to do more research to find out just how many people had the disease but I don’t think that everyone needs to have a full genetic history done. Having mandatory family genetic history tests done would lead to a lot of worrying and unnecessary testing by people who feel they are at risk for certain conditions.

    Insurers could offer genetic testing and counseling to their customers but I feel that this would have to be on a case by case basis and customers would have to show a strong disposition and family history in order to receive the testing. The testing and counseling would be very costly to the insurance companies if they let every customer receive it, so I think there should be regulations on who receives the testing.

    If I had the opportunity, I’m not sure if I would participate in genetic testing and counseling. I know a little bit of my family history and know that some conditions run in the family but I’m not sure if I would want to know if I had a genetic mutation to cause the disorder. If I found out that I did, I would just worry all the time and wonder what I should do about it, like Joanna in the film we watched. But at the same time, as I become older I might change my mind because the threat of developing diseases or cancer becomes exponentially greater. It’s a difficult decision for anyone, but I think people would need to look into their history to figure out if it is necessary for them to get genetic testing or not before they go through with it.

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  22. I don't think knowing your family genetic history is imperative for everyone - it can be cicumstantial. If you know you and your family are at higher risk for a certain disorder based on your family medical history, it might become imperative for you to be tested. As the American Cancer Society article points out, you should see a genetic counselor before you actually get tested to actually discuss if the results will be useful for you and what kind of implications the results can have on you and your family.

    I do think that public and private insurance companies should prove free genetic testing to their customers if the customer wants it. Genetic information would not be very useful to insurance companies because of GINA, but I do think it should be offered for the peace of mind of the customer. If results look bad then customers can take preventive action against the disease - this preventive action may end up saving the insurance companies a lot of money if the treatment for the disease is expensive and treatment would take awhile.

    I can't say I would partake in genetic testing at my age right now, but perhaps in the future. After watching the first part of the movie "In the Family" during class I don't think I need to know my genetic history at this point in my life. There aren't too many prevalent genetic disorders in my family so it is not as concerning to me as it was to the filmmaker Joanna. But after watching the movie, I feel that the psychological implications of knowing are lessening Joanna's quality of life - the thought of ovarian or breast cancer is always on her mind now that she knows she has the BRCA 1 mutation. She is so young and always worrying about a disease that probably won't affect her for another 10 years. I don't think I would want to live like that. Perhaps when I am at the age at which I am at higher risk of developing a certain disease that is prevalent in my family I may re-consider having genetic testing.

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  23. I think that knowing one's family history is only imperative when trying to calculate one's risk of developing a disease. There are environmental risk factors and genetic risk factors that influence disease, but I don't think the true likelihood of developing a disease can be determined without considering family history.
    I also think more public and private insurers, especially Medicaid, should cover genetic testing. To avoid misuse of genetic testing, subscribers could maybe provide a letter from their primary care physician saying something like, "This individual seems likely to develop this condition based on these environmental risk factors and his family history, so genetic testing would be beneficial in determining his exact risk." Having something like this, proof that substantiates a subscriber's need for genetic testing, would allow insurers to ensure that they reimburse at-risk individuals for genetic testing.
    Lastly, I think I would participate in genetic testing and counseling if it was free because a lot of my mom's side of the family, both men and women, have been affected by various types of cancer. While I'm sure I would be overwhelmed by the information that would be revealed to me, I think I would appreciate knowing my genetic susceptibility to various cancers. I can make lifestyle choices to try to decrease my risk and having routine screening to closely monitor myself. I would rather know my risk and try to regain some control over my health than be surprised by my deteriorating health later in life.

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  24. It is imperative that we know our families' genetic histories. Regardless of whether or not the disease is serious, family history can help us track common links between generations and give us an idea of what genes are responsible for what. Moreover, this information can be used to plan for future generations. For example, if your family history shows that you are at risk of a serious disease, it might be important to take this into account before you start having children. Finally, earlier, we watched "The Ghost in Your Genes," where researchers believed that what previous generations were exposed to affects us today. This just goes to further show that family history is important to know because older generations still have a large effect on who we are today.

    I believe that public and private insurers should provide genetic testing and counseling to their customers ONLY if these customers are at high risk of getting a disease. For example, in the film we are watching in class, Joanne has an 80-90% chance of developing breast cancer because of a mutation that runs in her family. I believe that insurance should cover genetic testing for individuals like Joanne, who have examined their family histories and found that they are at a high risk of getting a serious disease. However, I don't believe that health insurance companies should be obligated to cover for individuals who aren't at risk based on their family histories and risk factors.

    If I had the opportunity, free of charge, to participate in genetic testing and subsequent counseling, I wouldn't participate in genetic testing and subsequent counseling. Based on my family history, I'm not at risk for any diseases. I feel like getting a genetic testing will give me anxiety, especially if results come back to suggest that I have mutations and am at risk for some diseases. These tests aren't conclusive and just because we have a mutation doesn't mean we'd get the disease so I think getting the test will only increase emotional stress for me.

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    1. Lena, I want to comment on your point about insurers providing genetic counseling and testing to customers. First, much of the American public is uninformed about the details of genenomics. A lack of understanding regarding gene mutations and relative risk based on familial genetic links is definitely present. Joan happened to look heavily into her family's genetic history, but I feel that most people who are either unaware of their ancestor's disease history or have been hidden from them do not do this. Whose responsibility would it be then , in your case-scenario, to determine what percentage of risk for inheritance of a disease is "high risk"? 80-90% is a very high risk but I don't think anyone can really know their exact risk UNTIL they get genetically tested. Also, is a person looking into their family history something that must be done before they are considered for coverage? I'm sure this could be a preliminary step in gauging risk, but even with researching this it is difficult to tell who falls into the high, low or moderate risk categories for insurance companies to then decide if they want to cover you. In my opinion, everyone should be covered equally: Either set the precedence as covering everyone or have no one be covered.

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  25. Although it would be a good advantage to know your family medical history, I don't think it is imperative. However, I think families should talk about and educate other family members of potential predispositions. For instance, I think a mother should let her daughter(s) know if their family has a significant history of breast cancer, ovarian cancer, etc. This would help make better life choices especially when it comes to behavioral decisions such as tobacco use, alcohol, and poor diet.

    I agree with Lena that insurance companies should only provide coverage if deemed necessary. Such situations include extensive family history, showing symptoms, or someone who would be considered at risk for developing a disease. If I had a free opportunity to participate in genetic testing I would not do it. Currently, I feel like I am pretty healthy and my family medical history is insignificant for any major diseases. At this moment, if my results came back positive for any mutation I will be completely paranoid about developing a disease. I might even become a hypercondriac. Once Joanna found out she was positive BRCA1&2, it consumed her life. It was all she could think about; I know I would go through the same thing if my results were positive. However, in Joanna's case she had a reason to be worried because her mother had ovarian cancer. Fortunately, we don't have a history of cancer in my family so I feel like I can relax my mind for now. Also, the tests can only provide estimated likelihood of developing a disease and they are not concrete results.

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  26. As a health science student, I'm somewhat on the fence with the importance of genetic testing to determine one's cancer risk. I feel like the arguments for both sides have equally compelling and important factors. So, I will phrase my argument like this: while I believe that advancements in science and understanding of the human genome have allowed those seeking genetic information about themselves to get that information and act according to those results, it should in no way be "imperative" that we discover our own disease risk if we do not want to. I believe that this respects one's decision to live his or her life in a certain manner. Knowing your disease risk will almost undoubtedly change the way you live your life - for the better or the worse. As a pre health professional, I think having the knowledge with a bit of paranoia and being able to act accordingly is more important that living a life without the knowledge of potential diseases that are ahead. But, I do think it is entirely up to each individual person. There should not be any pressure to get genetically tested if one has no desire to do so.

    I do think that some form of genetic testing should be covered by insurance. More preventative care should be covered by insurance companies, and genetic screening is, in my opinion, one of the best preventative measures one can take to avoid diseases down the road. Realistically, I think that everyone should get one free genetic test for difference diseases. The information obtained during these tests could potentially save insurance companies millions of dollars down the road. It is in their best interest to pay for preventative care rather than treatment.

    Lastly, given the opportunity, I would most definitely get genetically tested. There are a few diseases that run in my family, and I would like to know my risk of getting these diseases, and what I can do now to prevent those diseases. I want to have as much knowledge as I can so I can adjust my lifestyle to the results.

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  27. I don’t think it is imperative for me to know my family genetic history. It is however a good idea to be aware of it and to understand my family genetic history. Knowing whether or not I have a higher chance for certain diseases can possibly be a motivation for me to take care of my health. Some would argue that knowing that they have a higher chance for certain diseases will make them paranoid but I believe it can also be the main reason for people to live a healthier lifestyle. Knowing that your family has a history of a certain disease can make you more aware of your own personal lifestyle.

    I believe that the insurance provider should not base his or her coverage by someone’s genetic history. That would be very unfair and unethical as well. It basically goes against GINA and discriminating people by their health. However, I do believe that insurance companies should help provide genetic testing upon patient’s request. This will actually help the insurance company as well because once the patients have more understanding of their health history; they will be able to take early actions to prevent certain disease. By doing this, it can possibly help to save the insurance company money in the long run.

    If the genetic testing was available for me, I would most likely be interested to find out about my family’s genetic history. I would take it so that I can be informed about which diseases my family has a higher chance of getting and take early prevention if it was necessary.

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  28. I find the film that we are currently watching. In the Family, to be very empowering. Since taking genomics, I’ve starting pondering what would happen to me if I got a genetic test and found out I was at high risk for developing a deadly illness. Before watching the film, I thought the decision was easy—to do everything possible to evade the disease, even if it includes sacrifices. However, from the film, I learn that the decision was not that easy. Also, talking to others who have gone through the disease you potentially can develop can really impact your decision-making. Joanna is a young-, carefree, adventurous woman who has her whole life ahead of her. Even after finding out she had the BRCA mutation, she didn’t seem bothered and refused the possibility of getting her breast and ovaries removed because she wanted to enjoy her life and have children one day.
    But after talking to a support group of several women with the BRCA and learning about several different views, Joanna got anxious about her condition and reconsidered her thoughts about the mutation. Before all this, she was somewhat in the “ignorance is bliss” state of mind. Just knowing she had the mutation was affecting not only her, but also everyone around her (Ie her boyfriend petrified of losing her). From what we watched so far, I learned how heavy the psychological gravity is from just learning that you have a high risk of developing a disease. In my opinion, Joanna is in a good condition since she is young, aware that she has the mutation, and gets screening frequently.

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  29. I don't think that knowing one's genetic family history is imperative but it could be helpful. If you already know that your family has high rates of certain diseases then getting a genetic test can tell you if you have a heightened risk due to genetics or if you do not have a genetic risk factor. However, as we saw from the first half of the movie, knowing more about your genetic risk for certain diseases may not actually be helpful. Joanna knew she had a heightened risk for breast/ovarian cancer because of her genes but it caused her a lot of worry and did not really seem to help her situation. Joanna already knew she had to be aware of breast/ovarian cancer because of her family history, all the genetic test did was reaffirm her that she had to be extra aware of the risk of breast cancer. Furthermore, someone people do not understand genetics even with the help of a genetic counselor and these tests which may only show a sightly higher risk may cause people without enough education a lot of unnecessary stress and worry. A gene may cause a person to have double the risk of developing a disease compared to the general public but if that only increases their risk from 5% to 10% that may sound high to some people but that is not a huge increase. I think that people should only know their genetic history if they already have suspicions that they may have a genetic risk factor for a certain disease but honestly, I think if the general public knew their genetic history that would cause too much worry and stress considering how frequently people misunderstand genetics and genetic information.

    While I don't see genetic testing as imperative, the US health insurance system has far too many gaps and I think it should cover genetic testing if a doctor recommends it to a patient rather than everyone who wants a genetic test just gets one. I think that their should be a requirement that if someone gets genetic test they must see a genetic counselor so they do not misinterpret it. I think both public and private insurance should cover testing and counseling because it can be very important and useful in certain situations.

    If I had the opportunity free of charge, I would not participate in genetic testing. While cancer does not run in my family I know other conditions do. I know I need to be aware of these conditions and make life style choices to reduce the risk of these conditions. I don't think genetic testing would change my attitude since I already know that I have to be conscious of these things. Knowing myself, even though I know I probably have an increased risk of these conditions having that confirmed by genetic test would cause me too much stress and anxiety and would not be helpful. Based on some people's personalities getting genetic tests may be the right choice, but I know that would not be the right choice for me.

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  30. I believe it is important to know your family's genetic history. Knowing this information can greatly help someone make good behavioral choices regarding their health. For example, since my mother has had breast cancer, it would be very informative to know her genetic history. This way I could know if there was more of a genetic influence that cause her cancer or more of an environmental or behavioral influence over time. Also, if someone has knowledge of their family's genetic history, it can better motivate them to get genetic testing themselves or to make better, healthier choices if they are more at risk for a disease. I think that insurers should contribute to genetic testing. Relating back to my family, my mother wanted to get genetic testing for herself and her three children. However, genetic testing with no assistance from insurance is very expensive, and this information can help my family a lot. Perhaps one day insurers will be able to pay a component of the fee for the testing and patients can just make a copay. If I had access to genetic testing I would definitely decide to get it because I would like to know more about my family's disease history. My mother was also adopted, so knowing her genetic information would be especially helpful, especially since I do not know what diseases my grandparents had. I believe that receiving genetic testing and counseling can truly benefit a person and help them live their healthiest lives possible.

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  31. As a patient, I would love to know about my family history and likelihood of cancer. I think most people would, so I won't touch on it too much. It is important to know and be aware so that one can take the necessary precautions through procedures or lifestyle changes. However, I am torn on whether or not health insurance companies should be obligated to pay for such a procedure. On one hand, it is likely in the patient's best interests, should they opt for it, but on the other hand, does this mean that the provider can charge more for this patient given their likelihood of increased medical expenses? My insurance (Kaiser), charges more if a person smokes (I believe) because it lends to lung cancer and unhealthy lifestyles. In that same vein, cancer does too. However, cancer is nonvoluntary. I think that patients need to either be willing to foot the bill for their genetic tests, given that it is non-urgent and more informational than medicinal in nature, or be willing for their insurance companies to charge more if the patient doesn't lead a healthy lifestyle.

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  32. I believe that providing individuals the opportunity to receive genetic testing with
    the knowledge of their family health history is extremely important, and in many
    cases, life saving. If a person knows that a certain disease is prevalent amongst their
    family members, finding out if they are genetically predisposed to also developing
    the disease can help out in tremendous ways. Of course, this knowledge can also
    cause some anxiety and worry for family members if it turns out that a person does
    develop the disease in the future. This is why is it imperative that individuals are
    aware that a predictive test is not a diagnosis, and they should be given the proper
    information and facts from a genetic counselor on how they can make lifestyle
    changes to help further reduce their risk.

    Genetic testing and counseling should be provided by health insurers, but the
    results of these tests should in no way change the cost or amount of coverage
    offered to the individual being tested. I would personally participate in genetic
    testing and counseling in order to determine if I need to make any lifestyle changes
    and in order help reduce my risk of developing a certain disease. Genetic testing
    provides awareness in order that I can prepare and take the proper action steps in
    order to reduce and potentially eliminate this risk.

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    1. I completely agree with Brandi. I feel as though genetic testing can be very beneficial and is a great way of implementing more preventative care. I think people should have an "opt in" choice to get genetic testing if they would like to know their family history. If others do not want to cause unnecessary anxiety they should be allowed to pass on the genetic tests. However, I don't think the results of any tests should be used to alter health insurance price or coverage in any way. Genetic testing for family history is a good means for individuals to make necessary lifestyle changes that could potentially save lives.

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  33. I do think that it is imperative to know your family's genetic history. I think that knowing which diseases and conditions you may or may not be predisposed to could have enormous public health implications. This information could affect a person's decision whether or not to have children, for fear of passing on their genetic mutation. This could also cause people to seek treatment for their condition, raising awareness and the possibility of more available treatment options. In addition, knowing your family's genetic history could spur the decision to conceive children via IVF, and implanting only those embryos that do not carry the genes of interest. If this decision becomes a popular one for families, certain diseases even have the possibility of being completely eradicated.

    While I do think that insurers should provide genetic testing and counseling to their customers, I do not think that this should be a priority of insurers; I think that companies should work on expanding their coverage first, and on making basic insurance available to all people, before they focus on making currently unnecessary procedures available to their current customers.

    I would participate in genetic testing were I able, free of charge. If I found out I had the gene for a serious debilitating disease, such as Alzheimer's, it would very much affect my decision to have children, and how I would choose to live my life. I would also like to be given the opportunity to make appropriate steps in regards to treatment or settling affairs. Overall I think it is important to be informed.

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  34. I think everyone should know his or her family’s history so yes, it is definitely imperative. Most pediatricians and general practitioners ask the family’s history when the baby is born and also later in life, at least this is what I have experienced. In my yearly checkup, my general practitioner asks me if there has been a change in my family history. I’m not sure if this is something that every doctor asks, but the good ones should ask this because they understand the importance of the family history. Also, if we recall the first week of class, we saw in ‘The Ghost in your genes’ that family history and what our ancestors experienced throughout life can affect us and out genetics so many years later.
    I’m not really sure if I agree with insurance companies providing genetic testing and counseling for their patients. This is a tricky subject especially if the insurance companies find out that a patient is positive for a disease causing gene like the BRACA1/2 gene, they may be able to charge more for that. I’m sure every insurance company is different but my insurance company (Oxford) will charge extra is there is a smoker in my family and if we have a certain disease (I’m not sure exactly which ones). If the insurance company is offering the genetic testing and counseling without trying to charge extra for those who will test positive for a gene, I think it would be an excellent opportunity for these patients to get genetically tested. If I were given the opportunity to, I would get genetically tested because I understand the importance and the positive impact I can have on my life if I know I need to change my daily routine at an early stage of my life. But for some I understand it could make them upset and the counseling would really come in handy.

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  35. Alexander de GrootMarch 7, 2014 at 3:29 PM

    I view genetic testing as an option for disease treatment. Along with other information, such as family history, genetic testing can help people decide what treatment options are best for them, if they are necessary. Therefore, I think it is a personal decision whether or not to be tested for genetic anomalies, and so it is not imperative. However, I do believe it is imperative that people understand their family medical history, so that they have a better idea of how it could influence their health. As was discussed in "The Family History - More Important than Ever" article by Guttmacher et al., a family history is a good first look into a person's risk for genetic diseases, such as breast cancer, heart disease, or ovarian cancer. Often times, this information alone can be enough information for a person to make decisions regarding preventing their risk of disease. Thus, before obtaining a genetic test, people should understand their family history and then discuss it with a genetic counselor to see how the pros and cons of genetic testing balance out for their own individual circumstance.

    Because I view genetic testing as a tool for disease treatment, I do believe that public and private insurance companies should subsidize the costs for genetic tests and counseling. Depending on a person's discussions with a genetic counselor, testing could help a person decide if prophylactic measures need to be taken for disease prevention.

    All this being said, if genetic testing and counseling were free of charge, I would have a genetic test done, but only after thoroughly understanding my family history and discussing it with a genetic counselor. Genetic testing can be very distressing if the results come out negative, and taking the time to think about the pros and cons of having such powerful information is of the utmost importance.

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  36. I believe entirely that knowing one's family genetic history is important in the present as well as in the future. Knowing this information is advantageous as a person/family can sketch out an entire care plan and not be left in the dark when people are in a chaotic dilemma on what to do when required to assist a relative member in need. It doesn't hurt to have a plan in place when one's genes have somewhat predicted what disease the person may get in the future. Having knowledge of your family's genetic history is especially beneficial when planning to have a children. With today's technology, it's possible to modify some of the genes of a children so that they have less of a chance to develop a disease or mutation. I feel that if everyone can take advantage of modern technology and science, diseases that we fear now can be one day be rid of forever in the future.

    Insurers should provide genetic testing and counseling for their customers. However, these insurance companies should focus on other issues as I don't believe genetic testing/counseling is that high on the priority list. I'm taking HP353: Organization and Delivery of Health Care in the US at the moment, and after several weeks of taking the course, I realize how much the system needs to be fixed. We spend the most on health care, yet other countries' uniform health care is beating out system.

    If the opportunity would ever arise for a free genetic test, I would take it, but would make sure first that whoever is administering the test is doing so legally. Like I said above, knowing one's family genetic history is important to mapping out future plans for when I get sick or have a child with my spouse one day. However, I would have to make sure that if I do go through with the test that the company or whoever is providing the service will not use it for later use, give it to the government, or anything else that would require consent first.

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  37. Given the increased awareness of genetic components/factors that predispose or cause diseases and/or conditions, do you believe it is imperative to know your family’s genetic history? Also, should public (i.e. Medicaid and/or Medicare) or private insurers provide genetic testing and counseling to their customers? Finally, if you had the opportunity, free of charge, would you participate in genetic testing and subsequent counseling?

    I do not believe that it is imperative to know your family's genetic history because often times, you will have already known whether there are patterns for cardiovascular disease, diabetes, various cancers, and other diseases. General awareness (e.g. my mother had this disease, my grandmother had this, etc.) is not a surefire way of assessing one's risk of developing disease, but it has been fairly indicative to date. Likewise, I still consider genetic testing, the ability to understand one's entire biochemical makeup, a luxury so that is another reason why I do not believe it is essential.

    Following this pattern of thought, I have mixed opinions in regards to Medicaid and/or Medicare covering genetic testing. If there is a prevalent family history for some disease, then yes, genetic testing should be provided in the context of that disease. On the other hand, if the person has had a virtually healthy family history and continues to live a healthy lifestyle, then insurance companies should not feel obligated to cover genetic testing as in doing so would not be very cost-effective. Annual physicals could indicate a person's level of health, and based on this, the insurance company can or cannot provide coverage for genetic testing.

    Finally, if I had the opportunity to participate in a genetic test free of charge, I would choose not to do so. Had I found out I was some carrier or at great risk for a certain disease, I would have hated to live life in such a state of fear and uncertainty. Even if I found out I was at risk for a certain disease, most precautions are in line with the recommendations for a healthy lifestyle. Thus simply living life as healthy as possible is my preventive and curative solution.

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