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1. Introduction

Genetic profiling for the public has been around for a few decades but it has already changed many people’s lives. However, though it has many benefits an ethical issue arises should someone have the duty to disclose their genetic information to someone who may be at risk. In this essay, the issue of disclosure will be discussed, it will be broken down into 3 main topics: the advantages and disadvantages of genetic profiling; disclosing genetic information to family members and finally disclosing genetic information in the work place. This essay will then prove in its conclusion that there though there are ethical objections to disclosing genetic information there is a greater moral duty to show information.

1.1. Definition of genetic profiling

Genetic profiling is also called DNA and genetic finger printing. According to the glossary of the National Human Genome Research Institute (n.d., n.p) the definition is “Genetic testing is a laboratory test to look for genetic variations associated with a disease. The results of a genetic test can be used to confirm or rule out a suspected genetic disease or to decide the likelihood of a person passing on a mutation to their offspring.”

2. Genetic Profiling and Ethics

2.1 Advantages of genetic profiling and ethics

Even though genetic profiling is still relatively new, its positive outcomes can already be seen in the world around us. A layman’s example would be the use of genetic testing to discover the true paternity of a child. This has been used in many court cases to grant visitation rights to the father and maintenance to the mother. Genetic testing can also help prepare you for your future, if you test positive for a disease but you do not have the symptoms yet, you can help prepare yourself and family mentally and financially. You will also be able to make important lifestyle changes such as exercise, diet and quitting smoking which could help prevent or postpone the onset of the disease (School of Adult Medical Genetics, Colorado 2015, n.p.). Some see this as the ethical thing to do because it is possible through genetic testing to see if children and family members are also predisposed to certain genetic diseases and telling them earlier could mean they can prepare and prevent it better.

2.2 Disadvantages of genetic profiling and ethics

One con that many people use to argue against genetic profiling is that if people know that they might be “carrying” a gene that is infected they might be anxious, shocked or in denial and unwilling to tell their family (Eurogentest, European Union 2011, n.p.). Knowing you will have a specific disease in future might cause discrimination when you are trying to get health or life insurance which could mean your family might not be looked after if you pass away (School of Adult Medical Genetics, Colorado 2015, n.p.) this can also be the case with discrimination in the workplace. Another risk found with genetic profiling is that though you might carry the gene for a special disease it is possible that it a recessive gene and you might never get any symptoms, alternatively you might get it but you do not know how strong the symptoms will be as there is no way to test for that so tests can become ambiguous (Bionet, United States of America 2002, n.p.).

3. Disclosing to family members and privacy in the workplace

In the introduction of an article by Powers (2002, pp. 364-365), she explains that genetic testing brings about a better understanding of disease and hereditary disorders. She does state that the results can be vague but they regardless, they offer a wealth of information and should be protected from the public domain, but how far does the “public domain” go? Does it include family that may be in danger? Does it mean that employers should not be told even if it can cause a breach in public safety?

3.1 Disclosing to Family members

When doctors get their doctorates they swear on the Hippocratic Oath, the Hippocratic Oath is a series of rules and regulation a doctor has to follow. One of the most important rule is that of doctor-patient confidentiality which means that patients have complete autonomy in who they speak to about their state of health (Goddard, et al. 2006, pp. 104). This means that if a patient goes for any sort of genetic testing and finds out that they have such as, the scenario used in the question, bowel cancer they do not have to tell anyone else even if it could directly affect their family and doctors are not able to tell anyone else either. It is important for doctors to respect their patients confidentiality for two main reasons, first, patients might feel apprehensive to tell doctors information in the future which might not lead to incorrect diagnosis and secondly, patients might feel it is an invasion of their privacy and that one of their basic human rights are infringed (Wachbroit 1993, pp. 1392).

Although there are situations where a doctor can infringe on those rights, but none of those situations are to do with disclosing genetic information to family members because it may not always be completely correct and can be vague. The decision to keep things strictly confidential and to give all autonomy to the patient might seem ethical but only if you look strictly at right to the privacy of the person.

In a paper by Koppers, et al. 1998 pp. 474 argues it is not ethical if you know that the potential that family members may be affected by the results of your genetic test. Which means that no mater how ambiguous the test results are it is always better for the people at risk to know the potential of what they are facing so they can prepare even if the preparations are in vain. A problem that arises if you do not tell a family member is if something does happen, you might feel guilty causing psychological strain (Reilly, Bosher & Holtzman 1997, n.p.). Therefore it is recommended that genetic counsellors explain to patients that regardless of their relationship with their family members they should show genetic information as it will be towards the greater good.

3.2 Importance of disclosure in the work place

Besides for disclosing information to your family it is also important to show your genetic information with your employer if there is any chance that what you are doing will affect your job directly and put other innocent people in the face of danger. The worry is that genetic discrimination might begin to play a role in the workplace where there is already other types of discrimination such as sexism and racism. However in this every growing modernised world, some countries are already adding clauses in existing policies to protect workers against genetic discrimination (United States Department of Labour, Washington D.C. 1998, n.p.).

However, some companies already hold policies in which if a person is prone to a disease they might not get the job because they coud be endangering people. The most recent example is the one of the Germanwings co-pilot Andreas Lubitz who crashed an aeroplane into the French Alps earlier this year killing over 100 people. Lubitz had a history of mental health and did not tell his employers. As the investigation went on, a sick note was found in which Lubitz doctor told him to take a day off work, however he ignored this and it was that same day he crashed the plane (Eddy, Bilefsky & Clark 2015, n.p.).

If the company had known about his history of mental health it is possible that there would not have been a crash. This is why though genetic discrimination is horrible it is important in some professions such as a pilot, firefighter or police officer, where people’s lives are at risk to know if there are any sort of issues that can affect their job. Yeasly (1999 pp. 125) suggests that if the recessive gene for something like Huntington’s disease comes up it would not be discriminatory for the company to then do yearly genetic tests until symptoms show if they even show. This is important because it let’s the person prepares financially if it does happen and let’s the employers find a replacement and keep their peace of mind that no one will be effected. However this is only if the potential disease will directly affect their job, for example if someone has high blood pressure and they are on medication for it then there is no reason for these measures to be in place (Yeasly 1999 pp.127)

4. Conclusion

Throughout the essay, the ethical objections with letting people other than the tested patient know about genetic information has come to light with many authors and laymen alike saying that it is your information and you have every right to keep it from other people. However, a more prominent ethical situation has emerged in the form of the greater good, other people’s right to know. With illnesses such as the cold it is common for people to say ‘stay away, I do not want you to get sick”, why is it any different with a life threatening disease? All of the objections against disclosing genetic information no matter how persuasive they may seem do not account of the human life/lives that will be affected if they do not know what might be coming for them.

5. Reference List

1. Bionet, United States of America 2002, Medical risks, benefits and uncertainties of genetic testing, viewed 18 August 2015, http://www.bionetonline.org/english/content/gh_cont2.htm

2. Eddy, M, Bilefsky, D & Clark, N 2015, ‘Co-Pilot in Germanwings Crash Hid Mental Illness From Employer, Authorities Say’, The New York Times, viewed 19 August 2015, http://www.nytimes.com/2015/03/28/world/europe/germanwings-crash-andreas-lubitz.html?_r=0

3. Eurogentest, European Union 2011, Possible Risks and Limitations, viewed 18 August 2015, http://www.eurogentest.org/index.php?id=622

4. Goddard, B, Hulimass, T, Letendre, M & Ègalite, N 2006, ‘Guidelines for disclosing genetic information to family members: From development to use’, Familial Cancer, vol 5 pp. 103-116, doi:10.1007/s10689-005-2581-5

5. Koppers, B.M, Storm, C, Wright Clayton, E, Murray T, Fibison, W & Luther, L 1998, ‘Professional disclosure of Familial Genetic information’, ASHG Social Issues Subcommittee on Familial Disclosure, vol 62 pp. 474-483, viewed 18 August 2015, http://www.ashg.org/pdf/pol-29%20.pdf

6. National Institutes of Health, United States of America n.d., ‘Talking Glossary of Genetic Terms.’ National Human Genome Research Institute, viewed 25 August 2015, from http://www.genome.gov/glossary/

7. Powers, M, 2002 ‘Privacy and genetics’, in Justine Burley and John Harris (eds), A Companion to Genethics, pp. 364-377, Blackwell

8. Reilly, P.R, Bosher, M.F & Holtzman, S.H 1997, ‘Ethical issuesin genetic research: Disclosure and informed consent’, Nature Genetics, vol 15, pp.16-20, viewed 19 August 2015, http://www.nature.com/ng/index.html

9. The School of Adult Medical Genetics, Colorado 2015, Benefits of Genetic Testing, viewed 18 August 2015, http://www.ucdenver.edu/academics/colleges/medicalschool/programs/Adult%20Medical%20Genetics/GeneticTestingInfo/Pages/GeneticTestingInfo.aspx#tab-2

10. United States Department of Labour, Washington D.C. 1998, Genetic Information and the Workplace, viewed 19 August 2015, http://www.dol.gov/dol/aboutdol/history/herman/reports/genetics.htm

11. Wachbroit, R 1993, ‘Rethinking Medical Confidentiality: the impact of Genetics’, HeinOnline, vol 27, pp. 1391-1410, viewed 19 August 2015, http://www.heinonline.org.ezproxy.lib.monash.edu.au/HOL/PrintRequest?collection=journals&nocover=&handle=hein.journals%2Fsufflr27&id=1411&toid=1430&div=123&section=123&print=section&fromid=1411&format=PDFsearchable&submit=Print%2FDownload&email_addr=&email_subj=PDF+from+HOL&email_msg=The+following+PDF+has+been+sent+to+you%3A%09%09 12. Yesley M.S 1999-2000 ‘Genetic difference in the workplace’, Jurimetrics, vol.129, pp. 129-142

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