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Stanford BIO 118 - Implications of Genetic Discrimination - Who Should Know What?

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1Allison CampbellDecember 9, 2002Biochem 118Prof. BrutlagImplications of Genetic Discrimination: Who Should Know What?Imagine a picture of yourself in 20 years. Where would you be? What would yoube doing? Who would be standing beside you? Many people believe that their genesprovide an analogous picture of their medical future. This belief is not only wrong, butdangerous. Advances in the human genome project have revealed ways to obtain knowledgeof an individual’s present medical condition and future risks, but do not allow an exactprediction of the individual’s medical future. A physiological defect is not alwaysgoverned by a person’s genes and, most of the time, the presence of certain alleles servesonly to confirm a greater risk of developing the corresponding disease. In only a fewcases, research in human genetics has made it possible to clearly link genetic makeup toan unavoidable disease. These specific cases, which are far fewer than perceived by thepublic, raise issues of genetic discrimination. They also serve as a warning that futureresearch will progressively reveal more disease-gene links, thus leading to an urgent needfor thoughtful examination of the issues, policy making, and guidelines for minimizingthe dangers of genetic discrimination based on access to genetic information. This paperoutlines first, the risks of unrestricted access to genetic information, then the advantagesof access to genetic information, and finally proposed actions to control geneticdiscrimination.2Risks of unrestricted access to genetic informationOne major risk of unrestricted access to genetic information is discrimination byhealth insurance companies. This risk is specific to the Unites States, due to its privitizedhealth care system. As the U.S. health care system becomes more socialized, the risks ofgenetic discrimination by health insurance companies will be reduced. Whereas insurerspreviously used group statistics to determine risks of diseases, they could obtain morereliable information on the likelihood of developing a disease based on individual geneticinformation. Armed with an individual’s genetic information, insurance companies couldidentify and quantify that individual’s risk factors and adjust his premiums accordingly.In order to increase profit per patient, the insurers could set up individualized premiumsbased on each patient’s risk level, so that instead of having equal premiums based onshared risk, people whose genetic make-ups demonstrate greater risk would have higherpremiums. Taken to the extreme, those whose genetic information predicts diseases thatrequire extended or extremely expensive treatment could find their premiumsprohibitively expensive or be denied coverage altogether, even though these are thepeople who most need medical insurance.Medical insurance is provided by employers for three-quarters of the Americanpopulation. Twelve out of the Fortune 500 companies are already doing geneticscreening during the employment process. This offers the company a chance to reducemedical insurance premium costs for their employees. In this way, genetic discriminationcan be the basis of saving money allocated towards medical insurance premiums andincreasing profit. More ominous, however, is the potential for employers’ geneticdiscrimination based on predictions of productivity and time of death of employees. Why3hire, train, or promote an employee who is likely to become medically disabled five yearssooner than others?For example, Huntington disease is a neurological disorder that can be detectedgenetically before or after diagnosis. On the end of a short arm on chromosome 4, thereare normally 10-20 repeats of cytosine, adenine and guanine (CAG). When 36 or morerepeats of CAG are detected in this location, the patient has or will have Huntingtondisease. Because there is no treatment for this disease, death usually occurs after 15years of progressive decline. A person predisposed to Huntington disease will havelower productivity and will probably die sooner than his peers. Given this information,an employer seeking a reliable, long-term employee would most likely discriminateagainst someone with Huntington disease, thus interfering with the afflicted person’sequal opportunity. Given the expense of increased insurance premiums, most employerswould avoid hiring that person, leaving him unemployable long before his abilities havebeen affected by any medical condition.In addition to risks involved with medical insurance and employment, there aremany personal decisions which could be influenced by unrestricted access to geneticinformation. If colleges, medical, law or business schools had access to the geneticmakeup of their applicants, they could find out which ones were predisposed to diseasesthat would lead to early death or low productivity. The consequence could be lessrecognition or financial contributions for the school and therefore, the admissionsdepartment might be less inclined to offer admission to an applicant based on geneticinformation. Another scenario of genetic discrimination is in the case of adoptive parentsand egg or sperm donors. Genetic information given to adoption agencies, sperm banks,4and people requesting egg donations could lead to discrimination as prospective parentsattempt to bring genetically privileged babies into their lives. Even marital decisionscould be affected upon learning about a partner’s genetic information. Computer-assistedmatching services are becoming popular, especially among young adults with demandingcareers, so supplementing the available data with personal genetic information isforseeable in the near future. Such examples of the possible uses of genetic informationare countless, and so are the risks of genetic discrimination.Advantages of access to genetic informationThe primary advantage to open knowledge of one’s genetic makeup is a moreindividualized, effective and efficient medical treatment. A patient’s genetic informationprovides his doctor a more complete background of his condition. With this knowledge,the doctor is able to prescribe more appropriate, more effective treatment, includingmedications. With further progress in genetic research, doctors may soon be able toidentify genes that would predispose negative or positive reactions to certain drugs, andside effects to others. This knowledge would help patients avoid having to try severaldifferent drugs or


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Stanford BIO 118 - Implications of Genetic Discrimination - Who Should Know What?

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