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Genetic Information Privacy

发布时间:2018-02-23
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Genetic Information Privacy

Title

Pages

Introduction

3

Historical Background

4

Interest group involvement

5, 6

Conclusion

7

Reference

8

Table of content

Introduction

Privacy refers to the right of individuals to limit access by others to the exposure of their people which includes thought, recognizing information, and even information contained in bodily tissues and fluids (M., 2004). Despite the fact that privacy is not clearly explained in the United States Constitution, numerous think about privacy as an essential human right.

There are contrasts of opinion about the importance of genetic information for people and their families. What makes genetic information special is that it uncovers information not pretty much about the single person from whom it was gathered, yet additionally about his or her relatives who may not by any mean be mindful that information was accumulated. It might likewise uncover information about the bigger population of which the individual is a part. Basically, genetic information can be uncovered about the people (and their families and populaces) simple from a tissue test or database.

Thusly, interpretation of the human genes makes privacy issues to a great degree of intense. Later on, genetic information on people and families—including, eventually, an individual's whole gene—will get to be progressively known and accessible. Medical research centers and other health awareness associations will need to reconsider the current security systems to stay away from dignitary damages, for example, criticism and discrimination related to violations of genetic information privacy.

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Historical Background

The common law-rights of privacy prevent public from revealing private facts, especially personal genetic information. This law likewise averts intentional intrusions upon the private issues or concerns of an individual. Such intrusions, then again, must be “extremely offensive”.

Miller v. Motorola INC illustrates the weakness of the intrusion violation action for securing genetic information privacy. In this case, an employer uncovered the mastectomy surgery information to the plaintiff’s colleagues. The Illinois court found no "intrusion" on the plaintiff because she had "voluntarily" provided the information to her employer. (O’Connor, 1990)

Perhaps the strongest evidence that genetic discrimination is a critical concern originates from the early 1970s, when some state governments ordered genetic testing of African-Americans to distinguish both carriers of and those suffering from sickle cell anemia. The state tried to support testing by arguing that bearers of the sickle cell gene could be hyper-helpless to certain workplace poisons. The segregation by both health insurers and employers that resulted from screening for sickle cell anemia was addressed by Congress in the 1972 National Sickle Cell Anemia Control Act, which restrained federal funds from the states that commanded sickle cell testing. (Feldman, 2012)

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Interest groups’ Involvement

Council for Responsible Genetics (CRG) represents the public interest and cultivates public debate about the social, moral and environmental ramifications of genetic innovations (CRG Organization). CRG is one of the interest group and were founded in year 1983 to. CRG is a privacy rights advocacy organization and their work includes genetic discrimination. In experience of many cases, individuals and family members whom have been banned from employment or lost their health and life insurance while taking into accountant evident or perceived genetic abnormality. Employees are often being discriminated by their superiors due to the accessible of medical or genetic information of the superiors. To solve this issue, several federal laws have been established, including the American with Disabilities Act and Health Insurance Portability and Accountability Act but yet these federal laws rarely scratch the surface of this issue.

Other than that, with the support of CRG and also other interest groups, President Bush successfully signed the Genetic Information Nondiscrimination Act (GINA) in 21 May year 2008. This law is to ensure that Americans are against segregation based on their genetic information regarding the matter of health insurance and employment. Common law and the Fourth and Fifth Amendments of the Constitution have recognized the right of privacy. GINA of 2008 prohibits all unlawful employment discrimination under Title II; Section 202Prohibiting Employment Discrimination on the Basis of Genetic Information. (Loyd, Pottorfff, Edmondson, & Frantz, 2008)

Other extra issues were caused by keeping up the restorative medical records that include genetic data. Section 1994 of the American Medical Association’s Code of Medical Ethics recommends that physicians should maintain separate records for genetic information sometimes so that they do not provide such information to the insurance companies (Feldman, 2012). At the point when genetic information is prohibited from a patient’s fundamental medical record, the AMA encourages the physicians to inform insurance companies (and different entities like employers) that genetic data is being withheld. Next, insurance agencies and employers were prompted to make clear in their appeals for medical information that they do not wish to receive any genetic information by having regulations going hand in hand with GINA of 2008.

Additional issues were raised by keeping up remedial restorative records that incorporate hereditary information. Segment 1994 of the American Medical Association's Code of Medical Ethics prescribes that doctors ought to some of the time keep up independent records for hereditary data so they don't give such data to insurance agencies (Feldman, 2012). Exactly when hereditary data is denied from an understanding's essential medicinal record, the AMA urges doctors to illuminate insurance agencies (and distinctive elements like bosses) that hereditary information is being withheld. In like way, regulations running as an inseparable unit with GINA (at year 2008) brief protection offices and executives to make clear in their offers for restorative data that they don't wish to get any hereditary data.

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Conclusion

October 2012, Privacy and Progress is reported in Whole Genome Sequencing about the Study of Bioethical Issues by the Presidential Commission. There were a total of 12 recommendations that offered to help and change contrast policies that are flexible enough to ensure the progress in testing while being responsive to privacy concerns. This is to double ensure that the privacy has been concerned.

Other than that, on June 13, 2013, Supreme Court issued the case of Association of Molecular Pathology v Myriad Genetics Inc. about the ruling. Myriad does not bring any problems when it simply just segregates a patients’ BRCA1 or BRCA2 gene before interpreting and confirming it for mutations related to breast cancer was said so by the Court. Experts think that it will be a good medium for researchers and commercial clinical laboratories to carry out the test for BRCA1, BRCA2 and other patent-protected genes where it creates more marketplaces for genetic testing and also open a widespread research chances for those who are interested studying both the biology of protected genes and the usage and utility by them in healthcare. (The Genetics and Public Policy Center Johns Hopkins University Berman Institute of Bioethics, 2015)

Lastly, the initiatives above had been progressed for only one purpose, the genetic information privacy. This is to ensure that the genetic information to be protected and not to be misused by other people

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Reference:

CRG Organization. (n.d.). About CRG. Retrieved February 26, 2015, from CRG: Council for Responsible Genetics: http://www.councilforresponsiblegenetics.org/Help/About.aspx

Feldman, E. A. (2012, February 8). The Genetic Information Nondiscrimination Act (GINA): Public Policy and Medical Practice in the Age of Personalized Medicine. Retrieved February 25, 2015, from PMC: US National Library of Medicine National Institutes of Health : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3358381/

Loyd, T. S., Pottorff, S., Edmondson, C., & Frantz, R. (2008). Case Study: Genetic Testing vs. Individual Privacy. Bioethics Workshop.

M., M. (2004, May 3). CIRE: Privacy and Confidentially. Retrieved February 24, 2015, from Privacy and Confidentially: http://ccnmtl.columbia.edu/projects/cire/pac/foundation/#sup1

O'Connor, J. (1990, July 23). MILLER v. MOTOROLA, INC. Retrieved February 25, 2015, from LEAGLE: http://www.leagle.com/decision/19901178202IllApp3d976_11071.xml/MILLER v. MOTOROLA, INC.

Genetic &Public Policy Centre. (2013, June 13). Supreme Court Rules against Patenting Human Genes, [Press release].

Retrieved from http://www.dnapolicy.org/news.release.php?action=detail&pressrelease_id=153

Amy Howe, Justices debate gene patenting issues: In Plain English (Apr. 15, 2013), SCOTUSblog,

Retrieved from http://www.scotusblog.com/2013/04/justices-debate-gene-patenting-issues-in-plain-english/

Privacy Today: A Review of Current Issues (March 1, 2001), Privacy Rights Clearinghouse.

Retrieved from https://www.privacyrights.org/ar/Privacy-IssuesList.htm

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