Allison Campbell December 9 2002 Biochem 118 Prof Brutlag Implications of Genetic Discrimination Who Should Know What Imagine a picture of yourself in 20 years Where would you be What would you be doing Who would be standing beside you Many people believe that their genes provide an analogous picture of their medical future This belief is not only wrong but dangerous Advances in the human genome project have revealed ways to obtain knowledge of an individual s present medical condition and future risks but do not allow an exact prediction of the individual s medical future A physiological defect is not always governed by a person s genes and most of the time the presence of certain alleles serves only to confirm a greater risk of developing the corresponding disease In only a few cases research in human genetics has made it possible to clearly link genetic makeup to an unavoidable disease These specific cases which are far fewer than perceived by the public raise issues of genetic discrimination They also serve as a warning that future research will progressively reveal more disease gene links thus leading to an urgent need for thoughtful examination of the issues policy making and guidelines for minimizing the dangers of genetic discrimination based on access to genetic information This paper outlines first the risks of unrestricted access to genetic information then the advantages of access to genetic information and finally proposed actions to control genetic discrimination 1 Risks of unrestricted access to genetic information One major risk of unrestricted access to genetic information is discrimination by health insurance companies This risk is specific to the Unites States due to its privitized health care system As the U S health care system becomes more socialized the risks of genetic discrimination by health insurance companies will be reduced Whereas insurers previously used group statistics to determine risks of diseases they could obtain more reliable information on the likelihood of developing a disease based on individual genetic information Armed with an individual s genetic information insurance companies could identify 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 premiums based on each patient s risk level so that instead of having equal premiums based on shared risk people whose genetic make ups demonstrate greater risk would have higher premiums Taken to the extreme those whose genetic information predicts diseases that require extended or extremely expensive treatment could find their premiums prohibitively expensive or be denied coverage altogether even though these are the people who most need medical insurance Medical insurance is provided by employers for three quarters of the American population Twelve out of the Fortune 500 companies are already doing genetic screening during the employment process This offers the company a chance to reduce medical insurance premium costs for their employees In this way genetic discrimination can be the basis of saving money allocated towards medical insurance premiums and increasing profit More ominous however is the potential for employers genetic discrimination based on predictions of productivity and time of death of employees Why 2 hire train or promote an employee who is likely to become medically disabled five years sooner than others For example Huntington disease is a neurological disorder that can be detected genetically before or after diagnosis On the end of a short arm on chromosome 4 there are normally 10 20 repeats of cytosine adenine and guanine CAG When 36 or more repeats of CAG are detected in this location the patient has or will have Huntington disease Because there is no treatment for this disease death usually occurs after 15 years of progressive decline A person predisposed to Huntington disease will have lower productivity and will probably die sooner than his peers Given this information an employer seeking a reliable long term employee would most likely discriminate against someone with Huntington disease thus interfering with the afflicted person s equal opportunity Given the expense of increased insurance premiums most employers would avoid hiring that person leaving him unemployable long before his abilities have been affected by any medical condition In addition to risks involved with medical insurance and employment there are many personal decisions which could be influenced by unrestricted access to genetic information If colleges medical law or business schools had access to the genetic makeup of their applicants they could find out which ones were predisposed to diseases that would lead to early death or low productivity The consequence could be less recognition or financial contributions for the school and therefore the admissions department might be less inclined to offer admission to an applicant based on genetic information Another scenario of genetic discrimination is in the case of adoptive parents and egg or sperm donors Genetic information given to adoption agencies sperm banks 3 and people requesting egg donations could lead to discrimination as prospective parents attempt to bring genetically privileged babies into their lives Even marital decisions could be affected upon learning about a partner s genetic information Computer assisted matching services are becoming popular especially among young adults with demanding careers so supplementing the available data with personal genetic information is forseeable in the near future Such examples of the possible uses of genetic information are countless and so are the risks of genetic discrimination Advantages of access to genetic information The primary advantage to open knowledge of one s genetic makeup is a more individualized effective and efficient medical treatment A patient s genetic information provides his doctor a more complete background of his condition With this knowledge the doctor is able to prescribe more appropriate more effective treatment including medications With further progress in genetic research doctors may soon be able to identify genes that would predispose negative or positive reactions to certain drugs and side effects to others This knowledge would help patients avoid having to try several different drugs or treatments to find the one that effectively treats a disease and eliminates or
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