Genetic testing - Obligated or Dilemma ?

“The decision to undergo genetic testing can only be made by the individual at risk for a disorder. Once a test has been conducted and the results are known, however, a new, family-related ethical dilemma is born: Should carrier of a known genetic risk be obligated to tell his or her relatives (Forrest et al., 2007; Gaff et al., 2007)?”

With the advancement of medicine and technology, there is an exponential growth in the field of genetic testing in investigating and identifying changes in chromosomes, genes or proteins to seek out genetic disorders (Cox, 2003). As genetic testing shifted from a paradigm of imagination into the realm of reality, there are concerns that genetic test results might have legal, ethical and social implications. In particular, a family-related ethical predicament arises on whether family members should be informed on the result of the genetic test with an identified genetic risk (Forrest et al, 2007; Gaff et al, 2007). It shall be argued in this essay individual and his/her family hereby proposing that individuals with an associated genetic risk should inform his/her family members.
Firstly, genetic test results could have a considerable emotional or psychological affect on the individual who had the test, as well as on his/her family members who shared a mutual family tree. Hence, a collective responsibility could be achieved without being isolated to the individual being tested. In addition, by revealing genetic test results to the immediate family members could change the way in which an individual is being treated by them. For instance, an early inception of Alzheimer disease or dementia is often resulted from a mutation in a main inherited gene (Fogarty, 2001). If an individual is identified to have inherited that mutated gene, family members could offer emotional support in the short term and workable help and care could take place once the dementia worsens. Landsbergen (2004) emphasizes in her research that emotional and behavioral factors are important in inhibiting debilitation of the spread of genetic information to relatives. Generally, family members are seen as a pillar of strength and support.In addition, by revealing genetic test results to relatives, psychosocial support of relatives could be achieved through spreading of the implication of the detected mutated gene within the family which in turn creates a domino effect in propagating a collective responsibility towards the next generation.
In addition, genetic test results provide a significant medical implication which aimed at discovering an actual or probable genetic disorders of an individual (carrier) or his/her family. Medical information and genetic information are often distinguished based on the information provided which concerns not just the individual but his/her family members as well. As illustrate by Spaak (2006), individuals who is diagnosed to have inherited a condition called familial adenomatous polyposis (FAP) could have his or her blood related family members of developing this condition, which could transforms into bowel cancer when not treated. However, if family members are warned that they are in risk group, perhaps they can decide to be tested and preventive measures could be carried out. Many individuals choose to undergo genetic testing are often influence by the realization of treatability and preventability within the family members. Godard B. et al. (2006) point out that individuals who are confirmed with a mutated gene may feel empowered by the genetic information collected that previous generations did not able to have and persuasively encourage other family members to undergo testing. It is important, however, to response any questions about the family history as truthfully as possible. As children grow older, they might have reservations about the family medical history. They can be reassured that, despite the family medical history, there are preventive measures they may be able to take to lower their genetic risk and pass this information to the next generation for reference.
Furthermore, revealing genetic test results could provide a shared financial burden within the family. Individuals that are burdened with a positive mutated gene would undergo treatments and preventive measures of the genetic disorder. As such, a substantial financial burden could occur to individual and his/her family. Yap (2005) emphasizes that individuals with a known genetic disorder are usually not qualified to acquire long term care insurance. Hence, by revealing genetic information to family members, financial burden could be collectively shared and a financial mechanism in planning could be worked out to lessen the individual’s and family’s financial burden. Genetic test results can also provide individuals and his/her family with the capacity to make beneficial life changing decisions based on the information gained from the test. For example, by telling his/her relatives about the genetic information results; life choices and decision could be made, like when should one retire or how much money should be set aside for the future.
In conclusion, revealing genetic test results have a positive emotional, medical and financial effect on both the individual and family members. However, revealing genetic test results raises the conflicts between a collective responsibility and the duty of confidentiality therefore the carrier with an associated genetic risk should be obligated to inform the family members. Yet ethical and social limit the principle of confidentiality. Sometimes, revealing genetic test result is solely based on its objective on whether the implication is good or bad and thus should be taken into great considerations. It would be a waste if such advancement of medicine and technology are not fully explored to benefit the betterment of mankind.
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References
1.Cox S.M. et al. (2003). International genetic testing. Genet Med, pp. 176-82.
2.Forrest L. E. et al. (2007). Communicating genetic information in families: A review of guidelines and position papers. European Journal of Human Genetics 15, 612–618 doi:10.1038/sj.ejhg.5201822.
3.Fogarty M. (2001). Genetic testing for people without symptoms of Alzheimer’s healthy patient Genetic Health. Retrieved October 26, 2009 from http://www.genetichealth.com/ALZ_Genetics_Testing_In_Healthy_People.shtml
4.Gaff C. L. et al. (2007). Process and outcome in communication of genetic information within families: A systematic review. European Journal of Human Genetics 15, 999–1011 doi:10.1038/sj.ejhg.5201883.
5.Godard B. et al. (2006). Guidelines for Disclosing Genetic Information to Family Members: From Development to Use. Familial Cancer, Springer Netherlands, Volume 5, Number 1, pp. 103-116. Retrieved October 26, 2009 from available from: https://commerce.metapress.com/content/rj856121383x7053/resource-secured/?target=fulltext.pdf&sid=mmsfiq45ndwqrm2xetuhavud&sh=www.springerlink.com
6.Landsbergen K. et al. (2004). Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients. Springer: DOI: 10.1007/s10689-004-7991-2. Abstract retrieved October 30, 2009 from http://www.springerlink.com/content/x13081858r0u14v7/
7.Spaak T. (2006). The idea of a right to genetic privacy. Juridisk tidskrift, pp. 326-339, 2008-09. Abstract retrieved October 26, 2009 from http://ssrn.com/abstract=923548
8.Yap E. (2005). Ethical, legal, social and policy issues in medical genetic testing of relevance to Singapore: personal perspectives. Genetic Testing and Genetic Research, Annex C-2. Retrieved October 26, 2009 from http://www.bioethics-singapore.org/uploadfile/21811%20PMAnnex%20C-2%20Dr%20Eric%20Yap.pdf