Genetic testing has become one of the most exciting advances and scientific technology in the modern world; also known as molecular genealogy, the process utilizes genetic testing to enhance traditional genealogical research (Genetic Genealogy.) Accompanying these developments, however, are a litany of ethical issues that confront researchers and scientists who are involved in this field. This paper will cover some of the more controversial issues raised by genetic screening.
Genetic testing provides data about a person’s genotype, and is relevant because it can assist in diagnosing health conditions, current and future. The initial understanding of genetic disease was first obtained about “single-gene disorders,” including such illnesses as sickle cell and cystic fibrosis (Freund, 2003.) These are conditions that occur because of genetic mutations in a single gene, and currently, medical researchers are able to also analyze the genetic makeup of more complicated disorders like diabetes and heart disease.
Use your promo and get a custom paper on
"The Ethics of Genetic Screening".
There are many genetic disorders that are chronic and progressive, and have a long-term effect on one’s health status. In many of such situations, the person may decide to undergo genetic testing, and when those results of certain disorders are treatable, it is reasonable for that person to undergo genetic testing. However, in situations such as that of Huntington’s disease, there is no treatment or cure, so is it helpful for a person to discover whether or not he or she has the mutation that causes it? Many people from families with a history of genetic disorders fear that if they are tested, the results might become public and cause employers or insurers to exclude them (McLean.) There are both legal and ethical issues in such a situation as to whether genetic testing would potentially open a can of worms that can significantly impact the person’s state of mind and quality of life.
When a person or an organization regards a person differently due to an actual or perceived genetic abnormality, genetic discrimination can occur. Many people in the United States are concerned that developing genetic tests and mandating such testing would threaten individuals’ privacy rights, leading to discrimination. One of the greatest sources of fear is that insurance companies could possibly require testing before accepting members and have the ability to either refuse coverage, decrease benefits, or increase premiums (Fulda, 2006.) Although several laws have been passed to protect consumers from such discrimination, such as the Health Insurance Portability and Accountability Act, or HIPAA, a large number of people surveyed who underwent genetic testing said that they would not bill their insurance companies and ¼ of them would use a false name (Fulda, 2006.)
Because of the rapid pace with which genetic technology has evolved, the ethical obligations of healthcare providers and researchers begin with the need to maintain competence in this developing science. Healthcare providers should be able to identify patients who are candidates for genetic testing (Ethical Issues in Genetic Testing, 2008.) Such patients would include women who are pregnant or considering pregnancy, or who are susceptible to giving birth to children with genetic abnormalities as well as women who may have or be predisposed to contract certain forms of cancer. If the patient is related to someone who has been diagnosed with cancer, and has the genetic susceptibility to the disease, she should be presented with options for counseling and follow-up as well as appropriate referrals. In addition, because one of the values of helping professions is the pursuit of social justice, healthcare providers are obligated to extend this responsibility to include the health care system which includes the fair distribution of healthcare resources (Ethical Issues in Genetic Testing, 2008.)
Since doctors are in an ideal position to educate patients, so that when they provide genetic counseling they are ethically obligated to give accurate and complete information as well is emotional support for patients who are given difficult genetic diagnoses or prognoses. In addition, clinicians must be cognizant of the possible risks linked to wide-scale genetic testing. Informed consent is another ethical obligation, in which healthcare providers are obligated to accurately let patients know about the possible consequences, both physical and emotional, of the screening.
The decision about whether or not to undergo genetic screening is extremely personal, and that choice usually depends on a variety of factors including the person’s perception of the preventability and treatability of the condition; in addition, another crucial factor is an individual’s capacity to make positive life changes with the information that is derived from such testing. While testing can certainly assist people in making decisions about planning for their families future and other lifestyle choices such as whether and when to retire or how much financial planning for the future should be undertaken, there are obviously negative consequences as well. For a person who is at high risk for becoming ill with a treatable disease like cancer, it may be very useful to have genetic testing to find out one’s health status. However, learning that one has a fatal disease such as Huntington’s can have tremendous negative implications socially, emotionally, and physically and can also create a situation for possible discrimination. Since different genetic screening tests do not always provide the scope of information i that families may desire and in addition, the test may ultimately require difficult decisions without providing full information (Donahue, 2005.) It is a decidedly mixed proposition.
- Ethical Issues in Genetic Testing. (2008, June). Retrieved from American Congress of Obstetricians and Gynecologists: http://www.acog.org/Resources%20And%20Publications/Committee%20Opinions/Committee%20on%20Ethics/Ethical%20Issues%20in%20Genetic%20Testing.aspx
- Genetic Genealogy. (n.d.). Retrieved from Enoch Pratt Free Library: http://www.prattlibrary.org/locations/maryland/index.aspx?id=41070
- K. Fulda, &. K. (2006). Ethical Issues in Predictive Genetic Testing: A Public Health Perspective. Journal of Medical Ethics, 143-147.
- McLean, M. (n.d.). What We Know Outstrips What We Can Do. Retrieved from Santa Clara University: http://www.scu.edu/ethics/publications/iie/v9n2/outstrips.html
- Norrgaard, K. (2008). Ethics of Genetic Testing: Medical Insurance and Genetic Discrimination. Retrieved from Journal of Nature Education: http://www.nature.com/scitable/topicpage/ethics-of-genetics-testing-medical-insurance-and-651
- Patricia Donahue, D. L. (2005). Women’s Health. Journal of Midwifery and Women’s Health, 234-240. Retrieved from Journal of Midwifery and Women’s Health: http://www.medscape.com/viewarticle/505222_4
- Sugarman, C. F. (2003). Genetic Testing: Ethical Issues. Retrieved from Gale Genetics Encyclopedia: http://www.answers.com/topic/genetic-testing-ethical-issues
