Genetic discrimination

File:H.R. 493 - Genetic Information Nondiscrimination Act (GINA) (27946508696).jpg

There are multiple legal protections in place in the United States, such as Genetic Information Nondiscrimination Act (GINA), the Americans with Disabilities Act (ADA), and the Affordable Care Act (ACA), which all help to prevent genetic discrimination in the workplace, public services, and provide some insurance protection.{{cite journal | vauthors = Field RI, Orlando AW, Rosoff AJ | title = Genetics and COVID-19: How to Protect the Susceptible | journal = Trends in Genetics | volume = 37 | issue = 2 | pages = 106–108 | date = February 2021 | pmid = 32943209 | pmc = 7456262 | doi = 10.1016/j.tig.2020.08.019 }} Therefore, by law, those with genetic conditions are protected from possible discrimination and have a right to receive equitable care.

Genetic discrimination is illegal in the U.S. after passage of the Genetic Information Nondiscrimination Act (GINA) on May 21, 2008.{{cite magazine | vauthors = Keim B | date = 21 May 2008 |url=https://www.wired.com/2008/05/the-genetic-inf/|title=Genetic Discrimination by Insurers, Employers Becomes a Crime|magazine=WIRED|access-date=2018-11-05|language=en-US}} It was signed into law by President George W. Bush, and passed in the US Senate by a vote of 95–0 and in the House of Representatives by 414–1.{{cite journal | vauthors = Feldman EA | title = The Genetic Information Nondiscrimination Act (GINA): public policy and medical practice in the age of personalized medicine | journal = Journal of General Internal Medicine | volume = 27 | issue = 6 | pages = 743–6 | date = June 2012 | pmid = 22314637 | pmc = 3358381 | doi = 10.1007/s11606-012-1988-6 }} The legislation bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions.{{cite web | url = https://www.genome.gov/pages/policyethics/geneticdiscrimination/saponhr493.pdf | title = Statement of Administration policy | archive-url = https://web.archive.org/web/20180821041344/https://www.genome.gov/pages/policyethics/geneticdiscrimination/saponhr493.pdf | archive-date=2018-08-21 | author = Executive Office of the President | work = Office of Management and Budget | date = 27 April 2007 }} GINA also protects individuals from genetic discrimination in healthcare;{{cite journal | vauthors = Hudson KL, Holohan MK, Collins FS | title = Keeping pace with the times—the Genetic Information Nondiscrimination Act of 2008 | language = EN | journal = The New England Journal of Medicine | volume = 358 | issue = 25 | pages = 2661–3 | date = June 2008 | pmid = 18565857 | doi = 10.1056/nejmp0803964 | doi-access = free }} however, GINA itself does not define what genetic information is, leaving it up for debate.{{cite journal | vauthors = McGuire AL, Majumder MA | title = Two cheers for GINA? | language = En | journal = Genome Medicine | volume = 1 | issue = 1 | pages = 6 | date = January 2009 | pmid = 19348693 | pmc = 2651591 | doi = 10.1186/gm6 | doi-access = free }} Prior to the 2008 GINA Act, individuals could be denied insurance, either partially or fully, based on genetic tests they had received.{{cite journal | vauthors = Otlowski M, Taylor S, Bombard Y | title = Genetic discrimination: international perspectives | journal = Annual Review of Genomics and Human Genetics | volume = 13 | issue = 1 | pages = 433–54 | date = 2012-09-12 | pmid = 22607273 | doi = 10.1146/annurev-genom-090711-163800 }}

Although it was passed in 2008 there were 201 cases that cited GINA in 2010 and 333 in 2014. It was not until 2013 that a company actually faced penalties under GINA.{{cite journal| vauthors = Gilbert N |date=2015-06-25|title=Why the 'devious defecator' case is a landmark for US genetic-privacy law|journal=Nature |doi=10.1038/nature.2015.17857 |s2cid=182253502 |doi-access=free }}

In 2008, The New York Times reported that some individuals avoid genetic testing out of fear that it will would impede their ability to purchase insurance or find a job. They also reported that evidence of actual discrimination was rare.{{cite news|url=https://www.nytimes.com/2008/02/24/health/24dna.html?_r=2&scp=5&sq=Genetic&st=nyt&oref=slogin&oref=slogin|title=Insurance Fears Lead Many to Shun DNA Tests| vauthors = Harmon A |work=The New York Times |date=24 February 2008 |access-date=2018-11-05 }} In November 2016 insurance company GWG Life was found to be collecting saliva samples in order to offer lower rates to people who are epigenetically healthier than others of their age. While this is positive discrimination, this does suggest future potential classification of clients by genetic data.{{cite journal | vauthors = Dupras C, Song L, Saulnier KM, Joly Y | title = Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination | journal = Frontiers in Genetics | volume = 9 | pages = 202 | date = 2018-06-08 | pmid = 29937773 | pmc = 6002493 | doi = 10.3389/fgene.2018.00202 | doi-access = free }}

While the 2008 GINA Act does protect against genetic discrimination pertaining to health insurance, it does not protect against genetic discrimination under other forms of insurance, such as life, disability or long-term care insurance. Therefore, patients are enjoying less protection against genetic discrimination in comparison with other peer countries, such as France, Switzerland, Australia and the United Kingdom.{{cite journal | vauthors = Bélisle-Pipon JC, Vayena E, Green RC, Cohen IG | title = Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries | journal = Nature Medicine | volume = 25 | issue = 8 | pages = 1198–1204 | date = August 2019 | pmid = 31388181 | doi = 10.1038/s41591-019-0534-z | s2cid = 199448885 }} Additionally, 2008 GINA offers no protection for home/mortgage insurance or when an employer has 15 or less employees. Excluded from the Act are also parties who are covered under Veterans Health Administration or Indian Health Services.{{cite web|url=https://ghr.nlm.nih.gov/primer/testing/discrimination|title=What is genetic discrimination? |website=Genetics Home Reference |access-date=2018-11-05}} Because a variety of medical tests serve as proxies for genetic information, proponents of insurer access to genetic information argue that it does not require specific limiting legislation. However, this represents an important problem for recruiting participants to medical research according to other scholars stressing that protecting American against discrimination may only happen with the advent of a voluntary moratorium by the insurance industry.

{{Main article|Direct-to-consumer genetic testing}}

Direct-to-consumer genetic testing was first offered in 1997 by GeneTree, a now defunct family history website. A genetic test is considered a direct-to-consumer test if it is presented to the consumer separate from a health care provider.{{cite journal | author = Center for Drug Evaluation and Research |date=2019-12-20|title=Direct-to-Consumer Tests|url=https://www.fda.gov/medical-devices/vitro-diagnostics/direct-consumer-tests|archive-url=https://web.archive.org/web/20190614212657/https://www.fda.gov/medical-devices/vitro-diagnostics/direct-consumer-tests|url-status=dead|archive-date=June 14, 2019|journal=FDA|language=en}} These tests are easily accessible on the market and popularized by companies such as 23andMe and Ancestry.com. These genetic kits are expensive and disproportionately serve wealthy individuals. As a result, when the data collected from testing is sold to research companies, it represents a biased sample of the population.{{cite news|url=https://www.cbsnews.com/news/dna-privacy-at-home-tests-23andme-ancestrydna-sell-data-to-third-parties|title=Behind at-home DNA testing companies sharing genetic data with third parties|access-date=2018-11-05|language=en | work = CBS News | date = 2 August 2018 }} The Food and Drug Administration additionally halted all 23andMe marketing in 2013 over unsubstantiated claims 23andMe made regarding disease diagnosis and prevention. After an investigation, the FDA approved 23andMe to begin carrier screening in 2015 and to resume genetic health risk screening in 2017.{{cite journal | vauthors = Allyse MA, Robinson DH, Ferber MJ, Sharp RR | title = Direct-to-Consumer Testing 2.0: Emerging Models of Direct-to-Consumer Genetic Testing | journal = Mayo Clinic Proceedings | volume = 93 | issue = 1 | pages = 113–120 | date = January 2018 | pmid = 29304915 | doi = 10.1016/j.mayocp.2017.11.001 | doi-access = free }} This has led the way for an expansion of the market of direct-to-consumer genetic tests.

The shortage of knowledge about and awareness of direct-to-consumer genetic testing is one of the contributors to the previously limited purchasing of this kind of service.{{cite journal | vauthors = Charbonneau J, Nicol D, Chalmers D, Kato K, Yamamoto N, Walshe J, Critchley C | title = Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia | journal = European Journal of Human Genetics | volume = 28 | issue = 3 | pages = 339–348 | date = March 2020 | pmid = 31645768 | pmc = 7029038 | doi = 10.1038/s41431-019-0529-8 }} As technology has progressed, genetic testing has become a more wide scale practice, potentially affecting the privacy of consumers as a result.{{cite journal| vauthors = Hoglund-Shen A |date=July 2017|title=Direct-to-Consumer Genetic Testing, Gamete Donation, and the Law: DTC Genetic Testing, Gamete Donation, and the Law |journal=Family Court Review|language=en|volume=55|issue=3|pages=472–484|doi=10.1111/fcre.12288}} While some providers of DTC testing destroy the samples after giving the consumer their data, others keep the samples for future data use.{{cite journal | vauthors = Tozzo P, Caenazzo L | title = The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks | journal = Biomolecules | volume = 10 | issue = 9 | date = September 2020 | page = 1273 | pmid = 32899386 | pmc = 7564942 | doi = 10.3390/biom10091273 | doi-access = free }} The way in which samples that are sent to DTC genetic testing companies are used after analysis is an important point of ethical controversy, as many worry that the creation of biobanks form DTC data creates increased possibility for genetic discrimination. Genomic information is playing an increasingly important role in medical practice and progress. As DTC companies continue to grow, a large obstacle they face is creating a sense of trust with the public in promising to uphold nondiscrimination standards as consumer health data is not currently regulated.{{cite journal | vauthors = Hendricks-Sturrup RM, Cerminara KL, Lu CY | title = A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs | journal = Journal of Personalized Medicine | volume = 10 | issue = 4 | date = December 2020 | page = 264 | pmid = 33287396 | pmc = 7761887 | doi = 10.3390/jpm10040264 | doi-access = free }} Some argue that the clinical utility of results from DTC tests is extremely limited and thus the risk of genetic discrimination is not worth the utility of DTC tests. However, DTC companies argue that the lack of regulation for these companies equip them for a unique position to provide important health related data for contributions to personalized medicine.{{cite journal | vauthors = Vayena E, Mauch F | title = [Personal genomics: are we debating the right Issues?] | journal = Praxis | volume = 101 | issue = 15 | pages = 961–4 | date = July 2012 | pmid = 22811328 | doi = 10.1024/1661-8157/a001008 }}

One current example of this ethical controversy was demonstrated in the 2018 announcement of 23andMe's partnership with the pharmaceutical company GlaxoSmithKline. In this deal, GlaxoSmithKline purchased a $300 million stake in 23andMe and in return 23andMe would allow the pharmaceutical company access to its biobank of genomic data for their pharmaceutical research.{{cite magazine | vauthors = Ducharme J | date = 26 July 2018 |title=A Major Drug Company Now Has Access to 23andMe's Genetic Data. Should You Be Concerned?|url=https://time.com/5349896/23andme-glaxo-smith-kline/|access-date=2021-04-07|magazine=Time}} While these companies made this announcement in celebration of the opportunity for progress in pharmacogenomics and drug development, others were wary of the possible breaches of privacy that selling customer's personal genomic data may entail. Privacy concerns include incidental data sharing to third-party companies, such as insurance companies or employers. Privacy concerns with genetic information also extend to family members of DTC customers, having similar genetic make-up to their family member who did consent to data sharing, although these individuals did not consent themselves.{{cite web | vauthors = King J | date = 7 November 2019 |title="It's not Personal" — DNA, Privacy, and Direct to Consumer Genetic Testing|url=http://cyberlaw.stanford.edu/blog/2019/11/%E2%80%9Cit%E2%80%99s-not-personal%E2%80%9D-%E2%80%94-dna-privacy-and-direct-consumer-genetic-testing|access-date=2021-04-07|website=cyberlaw.stanford.edu|language=en}} GINA protects against genetic discrimination in health insurance and employment; however, there are circumstances of exception. For example, GINA does not protect individuals from genetic discrimination in life insurance, disability insurance, and long-term care or employees in companies with fewer than 15 individuals or in the military.{{cite journal | vauthors = Lanton III R, Garfinkel C | date = 10 September 2018 |title=What Is Genetic Discrimination, and How Can It Affect Us?|url=https://www.pharmacytimes.com/view/what-is-genetic-discrimination-and-how-can-it-affect-us|access-date=2021-04-07|journal=Specialty Pharmacy Times| series = September/October | volume = 9 | issue = 6 }} DTC companies are not regulated in the same way as physician genetic testing and the disclaimers of data sharing in DTC companies is not as clear as medical biobanks, such as the All of Us project sponsored by the NIH. However, this does not necessarily mean that the intentions of DTC companies are nefarious. According to a qualitative study published in the Journal of Personalized Medicine, these companies can prevent the feared genetic discrimination from privacy breaches by advocating for updated policy to regulate data privacy and being intentional about only sharing genetic information to sources who intend to contribute to medical discovery with the appropriate ethical standards.

COVID-19, or a coronavirus labeled SARS-CoV-2, is a highly-transmittable, respiratory virus first identified in Wuhan, China, in December 2019. The virus' global spread caused the COVID-19 pandemic.{{cite journal | vauthors = Li H, Liu SM, Yu XH, Tang SL, Tang CK | title = Coronavirus disease 2019 (COVID-19): current status and future perspectives | journal = International Journal of Antimicrobial Agents | volume = 55 | issue = 5 | pages = 105951 | date = May 2020 | pmid = 32234466 | pmc = 7139247 | doi = 10.1016/j.ijantimicag.2020.105951 }} Some research suggests that genetic conditions are among the causes of co-morbid conditions that lead to more severe COVID-19 symptoms, such as death.{{cite web|last=CDC|date=2020-02-11|title=COVID-19 and Your Health|url=https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html|access-date=2021-04-06|website=Centers for Disease Control and Prevention|language=en-us}}{{cite journal | vauthors = Hou Y, Zhao J, Martin W, Kallianpur A, Chung MK, Jehi L, Sharifi N, Erzurum S, Eng C, Cheng F | display-authors = 6 | title = New insights into genetic susceptibility of COVID-19: an ACE2 and TMPRSS2 polymorphism analysis | journal = BMC Medicine | volume = 18 | issue = 1 | pages = 216 | date = July 2020 | pmid = 32664879 | doi = 10.1186/s12916-020-01673-z | pmc = 7360473 | doi-access = free }}{{cite journal | vauthors = Godri Pollitt KJ, Peccia J, Ko AI, Kaminski N, Dela Cruz CS, Nebert DW, Reichardt JK, Thompson DC, Vasiliou V | display-authors = 6 | title = COVID-19 vulnerability: the potential impact of genetic susceptibility and airborne transmission | journal = Human Genomics | volume = 14 | issue = 1 | pages = 17 | date = May 2020 | pmid = 32398162 | pmc = 7214856 | doi = 10.1186/s40246-020-00267-3 | doi-access = free }}

Early in the pandemic, many regions experienced shortages of medical resources like PPE and ventilators.{{cite journal | vauthors = Cohen J, Rodgers YV | title = Contributing factors to personal protective equipment shortages during the COVID-19 pandemic | journal = Preventive Medicine | volume = 141 | pages = 106263 | date = December 2020 | pmid = 33017601 | pmc = 7531934 | doi = 10.1016/j.ypmed.2020.106263 }} Due to the high volume of COVID-19 cases, hospital systems enacted triage protocols to direct the use of limited resources.{{cite journal | vauthors = Emanuel EJ, Persad G, Upshur R, Thome B, Parker M, Glickman A, Zhang C, Boyle C, Smith M, Phillips JP | display-authors = 6 | title = Fair Allocation of Scarce Medical Resources in the Time of Covid-19 | journal = The New England Journal of Medicine | volume = 382 | issue = 21 | pages = 2049–2055 | date = May 2020 | pmid = 32202722 | doi = 10.1056/NEJMsb2005114 | doi-access = free }} Some hospitals were accused of enacting discriminatory triage protocols which excluded those with genetic conditions, such as in Tennessee, where those with spinal muscular atrophy, an autosomal recessive disease, or other disabilities were prevented from receiving ventilators or other scarce resources.{{cite web|title=COVID-19 and Disability-Based Discrimination in Health Care|url=https://www.americanbar.org/groups/diversity/disabilityrights/resources/covid19-disability-discrimination/|access-date=2021-04-21|website=www.americanbar.org|language=en}}{{cite web | author = News Division |date=2020-06-26|title=OCR Resolves Complaint with Tennessee After it Revises its Triage Plans to Protect Against Disability Discrimination|url=https://www.hhs.gov/about/news/2020/06/26/ocr-resolves-complaint-tennessee-after-it-revises-its-triage-plans-protect-against-disability.html|access-date=2021-04-21|website=HHS.gov|language=en}}{{Failed verification|date=April 2024|reason=Neither source says that anyone was denied ventilators. They say that complaints were filed to the effect that the state's CSC plan effectively discriminated on the basis of disability, and that the state revised its CSC plan and the complaint was closed.}} In other states, like Washington and Alabama, hospitals were accused of broader discriminatory allocation policies which prevented larger groups of individuals with genetic conditions under categorizations of chronic conditions or intellectual disabilities from receiving life-saving treatments, such as ventilators.{{cite journal | vauthors = Chen B, McNamara DM | title = Disability Discrimination, Medical Rationing and COVID-19 | journal = Asian Bioethics Review | pages = 511–518 | date = September 2020 | volume = 12 | issue = 4 | pmid = 32901207 | pmc = 7471485 | doi = 10.1007/s41649-020-00147-x }}{{cite web | author = News Division |date=2020-04-08|title=OCR Reaches Early Case Resolution With Alabama After It Removes Discriminatory Ventilator Triaging Guidelines|url=https://www.hhs.gov/about/news/2020/04/08/ocr-reaches-early-case-resolution-alabama-after-it-removes-discriminatory-ventilator-triaging.html|access-date=2021-04-21|website=HHS.gov|language=en}}{{cite web|title=COVID-19 Medical Rationing & Facility Visitation Policies – Center for Public Representation|url=https://www.centerforpublicrep.org/covid-19-medical-rationing/|access-date=2021-04-21|website=www.centerforpublicrep.org}} Many advocacy groups raised complaints about these triage protocols to the Department of Health and Human Services Office of Civil Rights, and after the complaints the guidelines were removed.

Some commentators point to these instances as evidence that there are gaps among existent legal protections, like GINA, which may leave room for discrimination in long-term care and disability insurance, or the ADA, which more so covers ongoing disabilities, rather than susceptibility to conditions.{{cite web|title=Genetic discrimination|url=https://www.ama-assn.org/delivering-care/precision-medicine/genetic-discrimination|access-date=2021-04-07|website=American Medical Association|language=en}} Additionally conversations have turned to how to protect DNA and genetic privacy during a pandemic like COVID-19. According to Hollenstein et al., in a preprint of their research on preserving genetic privacy, they address the possible issue of mass-scale detections and numerous samples being collected through COVID-19 tests and contact-tracing and what that means in terms of who then has access or owns this genetic information.{{cite arXiv| vauthors = Hollenstein M, Naccache D, Rønne PB, Ryan PY, Weil R, Yifrach-Stav O |date=2020-08-01|title=Preservation of DNA Privacy During the Large Scale Detection of COVID-19|class=cs.CR|eprint=2007.09085}} While the exact solutions or changes to be made remain unknown, some solutions could possibly arise from research into equity-first preemption frameworks, which could help eliminate inequities in access to proper healthcare.{{cite journal | vauthors = Carr D, Adler S, Winig BD, Montez JK | title = Equity First: Conceptualizing a Normative Framework to Assess the Role of Preemption in Public Health | journal = The Milbank Quarterly | volume = 98 | issue = 1 | pages = 131–149 | date = March 2020 | pmid = 31951048 | pmc = 7077775 | doi = 10.1111/1468-0009.12444 }}

The Genetic Non-Discrimination Act received Royal Assent and became law in Canada on May 4, 2017.{{cite news|url=http://www.parl.ca/DocumentViewer/en/42-1/bill/S-201/royal-assent|title=Public Bill (Senate) S-201 (42–1) – Royal Assent – Genetic Non-Discrimination Act – Parliament of Canada |access-date=2017-05-04|language=en}} It introduced amendments to the Canadian Human Rights Act and Canada Labour Code that prohibit genetic discrimination in employment and accommodations within federally regulated industries, and also introduced criminal penalties for entities requiring individuals to undergo genetic testing as a condition for the provision of goods or services, or as a condition for entering or continuing a contract. The Act also forbids anyone from refusing to enter into a goods or services agreement with another person on the grounds that that person has refused to disclose the results of an already completed genetic test. Violations are punishable by fines of up {{CAD}}1 million and/or imprisonment of up to five years. Accordingly, one effect of the legislation is to prohibit insurance providers from demanding that a prospective client undergo a genetic test—or to disclose an existing test—as a prerequisite to the provision of insurance coverage.

The Genetic Non-Discrimination Act was opposed by the insurance industry and, upon its passage, then-attorney general Jody Wilson-Raybould stated she believed the law may be unconstitutional.{{cite news|date=March 8, 2017|title=Liberal backbenchers defy cabinet wishes and vote to enact genetic discrimination law|work=CBC News|url=https://www.cbc.ca/news/politics/genetic-testing-bill-vote-wednesday-1.4015863|access-date=10 July 2020|vauthors=Tasker JP}} The provisions of the law, as they applied to provincially regulated industries, were challenged by the government of Quebec before the Quebec Court of Appeal, which held them unconstitutional. On July 10, 2020, the Supreme Court of Canada reversed the decision and upheld the law in a 5–4 split ruling.{{cite news | vauthors = Stefanovich O |title=Supreme Court of Canada upholds genetic non-discrimination law |url=https://www.cbc.ca/news/politics/stefanovich-supreme-court-of-canada-genetic-information-1.5643245 |access-date=10 July 2020 |work=CBC News |date=10 July 2020}}

The Equality Act 2010 prohibits the use of genetic information for employment decisions such as hiring and promotions.{{cite web|url=https://www.legislation.gov.uk/ukpga/2010/15/contents?view=plain|title=Equality Act 2010|website=www.legislation.gov.uk|language=en|access-date=2018-11-05}} While no formal law exists banning the use of genetic information for insurance policy decisions, the Government of the United Kingdom and the Association of British Insurers voluntarily entered a moratorium from 2014 to 2019 to refrain from using genetic information with regards to insurance.{{cite web | url = https://www.abi.org.uk/globalassets/sitecore/files/documents/publications/public/2014/genetics/concordat-and-moratorium-on-genetics-and-insurance.pdf | title = Concordat and Moratorium on Genetics and Insurance | work = Association of British Insurers (ABI) }}

Malawi is the only country in Africa that has enacted any laws regarding genetic discrimination. Malawi's National Health Sciences Research Committee adopted the policy requirements of the Science and Technology Act No.16 of 2003.{{cite journal | vauthors = Joly Y, Feze IN, Song L, Knoppers BM | title = Comparative Approaches to Genetic Discrimination: Chasing Shadows? | journal = Trends in Genetics | volume = 33 | issue = 5 | pages = 299–302 | date = May 2017 | pmid = 28365141 | doi = 10.1016/j.tig.2017.02.002 }}

In Australia, genetic information is less likely to influence health insurance coverage decisions as health insurance is "community rated", meaning that all individuals pay the same amount regardless of their history or genetic makeup.{{cite web|url=https://www.nhmrc.gov.au/about-us/publications/genetic-discrimination|title=Genetic discrimination {{!}} NHMRC|website=www.nhmrc.gov.au|access-date=2019-11-14}} However, genetic test results can be used by life insurance companies to deny cover, increase the cost of premiums, or place exclusions on cover. Since 2008, the amount of insurance applications with attached genetic test results has increased by 90%.{{cite journal | vauthors = Barlow-Stewart K, Liepins M, Doble A, Otlowski M | title = How are genetic test results being used by Australian life insurers? | journal = European Journal of Human Genetics | volume = 26 | issue = 9 | pages = 1248–1256 | date = September 2018 | pmid = 29891881 | pmc = 6117272 | doi = 10.1038/s41431-018-0198-z }} Although the community rating for health insurance allows for a more even distribution of risk and cost to consumers, life insurance companies are legally allowed to "underwrite" when evaluating the genetic risks of applicants; essentially, those with higher risk could potentially be charged higher premiums. Life insurance companies can require individuals to report genetic testing results if they have already been tested, but cannot force individuals to take genetic tests.{{cite journal | vauthors = Tiller J, Otlowski M, Lacaze P | title = Should Australia Ban the Use of Genetic Test Results in Life Insurance? | journal = Frontiers in Public Health | volume = 5 | pages = 330 | date = 2017-12-13 | pmid = 29322039 | pmc = 5733354 | doi = 10.3389/fpubh.2017.00330 | doi-access = free }} These companies are able to require individuals to disclose genetic testing results from research and direct-to-consumer tests.

Research in Australia demonstrated that life insurance discrimination deters people from participating in research and pursuing clinical genetic testing.{{Cite journal |last1=Tiller |first1=Jane |last2=Morris |first2=Susan |last3=Rice |first3=Toni |last4=Barter |first4=Krystal |last5=Riaz |first5=Moeen |last6=Keogh |first6=Louise |last7=Delatycki |first7=Martin B. |last8=Otlowski |first8=Margaret |last9=Lacaze |first9=Paul |date=January 2020 |title=Genetic discrimination by Australian insurance companies: a survey of consumer experiences |journal=European Journal of Human Genetics |language=en |volume=28 |issue=1 |pages=108–113 |doi=10.1038/s41431-019-0426-1 |pmid=31281182 |pmc=6906286 |issn=1476-5438}}{{Cite journal |last1=Tiller |first1=Jane |last2=Keogh |first2=Louise |last3=Wake |first3=Samantha |last4=Delatycki |first4=Martin |last5=Otlowski |first5=Margaret |last6=Lacaze |first6=Paul |date=2018 |title=Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce |journal=Frontiers in Public Health |volume=6 |page=333 |doi=10.3389/fpubh.2018.00333 |pmid=30542646 |pmc=6277853 |issn=2296-2565 |doi-access=free }} In 2017, the Parliamentary Joint Committee on Corporations and Financial Services conducted an inquiry into the life insurance industry. In its 2018 report,{{Cite web |title=Report |url=https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Corporations_and_Financial_Services/LifeInsurance/Report |access-date=2023-07-05 |website=www.aph.gov.au |language=en-AU}} the Committee recommended an urgent ban on the use of genetic test results by life insurers, and that the Australian government maintain a watching brief to consider whether legislation was required in future.

In 2019, the Financial Services Council, the industry body for Australian life insurers at the time, introduced a voluntary, partial, moratorium on using genetic test results for applications up to certain financial limits.[https://fsc.org.au/resources/2634-fsc-moratorium-key-facts/file Genetic Tests and Life Insurance Key Facts][https://fsc.org.au/resources/1356-media-release-life-genetic-moratorium-30-october-2018/file FSC Announces Moratorium on Genetic Tests for Life Insurance to Start in July 2019] The moratorium is self-regulated, with no government oversight.

In 2020, the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) project was funded by the Australian Government Medical Research Futures Fund Genomics Health Futures Mission.{{Cite journal |last1=Tiller |first1=Jane |last2=Winship |first2=Ingrid |last3=Otlowski |first3=Margaret Fa |last4=Lacaze |first4=Paul A. |date=March 2021 |title=Monitoring the genetic testing and life insurance moratorium in Australia: a national research project |url=https://pubmed.ncbi.nlm.nih.gov/33550592/ |journal=The Medical Journal of Australia |volume=214 |issue=4 |pages=157–159.e1 |doi=10.5694/mja2.50922 |issn=1326-5377 |pmid=33550592|hdl=11343/298213 |s2cid=225484738 |hdl-access=free }}{{Cite journal |last1=Tiller |first1=Jane |last2=McInerney-Leo |first2=Aideen |last3=Belcher |first3=Andrea |last4=Boughtwood |first4=Tiffany |last5=Gleeson |first5=Penny |last6=Delatycki |first6=Martin |last7=Barlow-Stewart |first7=Kristine |last8=Winship |first8=Ingrid |last9=Otlowski |first9=Margaret |last10=Keogh |first10=Louise |last11=Lacaze |first11=Paul |date=2021-05-21 |title=Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project |journal=BMC Medical Ethics |volume=22 |issue=1 |pages=63 |doi=10.1186/s12910-021-00634-2 |issn=1472-6939 |pmc=8138092 |pmid=34020638 |doi-access=free }} The project was designed to evaluate the effectiveness of the moratorium in addressing genetic discrimination in Australia, from various stakeholder perspectives.

The project conducted research with consumers,{{Cite journal |last1=Tiller |first1=Jane |last2=Bakshi |first2=Andrew |last3=Dowling |first3=Grace |last4=Keogh |first4=Louise |last5=McInerney-Leo |first5=Aideen |last6=Barlow-Stewart |first6=Kristine |last7=Boughtwood |first7=Tiffany |last8=Gleeson |first8=Penny |last9=Delatycki |first9=Martin B. |last10=Winship |first10=Ingrid |last11=Otlowski |first11=Margaret |last12=Lacaze |first12=Paul |date=2023-05-11 |title=Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing |journal=European Journal of Human Genetics |volume=32 |issue=3 |pages=286–294 |doi=10.1038/s41431-023-01373-1 |issn=1476-5438 |pmid=37169978|s2cid=258637737 |doi-access=free |pmc=10923945 }} health professionals,{{Cite journal |last1=Tiller |first1=Jane M. |last2=Keogh |first2=Louise A. |last3=McInerney-Leo |first3=Aideen M. |last4=Belcher |first4=Andrea |last5=Barlow-Stewart |first5=Kristine |last6=Boughtwood |first6=Tiffany |last7=Gleeson |first7=Penny |last8=Dowling |first8=Grace |last9=Prince |first9=Anya |last10=Bombard |first10=Yvonne |last11=Joly |first11=Yann |last12=Delatycki |first12=Martin |last13=Winship |first13=Ingrid M. |last14=Otlowski |first14=Margaret |last15=Lacaze |first15=Paul |date=August 2022 |title=A step forward, but still inadequate: Australian health professionals' views on the genetics and life insurance moratorium |url=https://pubmed.ncbi.nlm.nih.gov/34544841/ |journal=Journal of Medical Genetics |volume=59 |issue=8 |pages=817–826 |doi=10.1136/jmedgenet-2021-107989 |issn=1468-6244 |pmid=34544841|s2cid=235238642 }}{{Cite journal |last1=Dowling |first1=Grace |last2=Tiller |first2=Jane |last3=McInerney-Leo |first3=Aideen |last4=Belcher |first4=Andrea |last5=Haining |first5=Casey |last6=Barlow-Stewart |first6=Kristine |last7=Boughtwood |first7=Tiffany |last8=Gleeson |first8=Penny |last9=Delatycki |first9=Martin B. |last10=Winship |first10=Ingrid |last11=Otlowski |first11=Margaret |last12=Jacobs |first12=Chris |last13=Keogh |first13=Louise |last14=Lacaze |first14=Paul |date=November 2022 |title=Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study |journal=European Journal of Human Genetics |volume=30 |issue=11 |pages=1262–1268 |doi=10.1038/s41431-022-01150-6 |issn=1476-5438 |pmc=9626480 |pmid=35902697}} genetic researchers and financial services personnel. It also conducted a policy analysis of the moratorium compared with the recommendations made by the Parliamentary Committee in 2018, finding that the moratorium did not meet the expectations of the recommendations.{{Cite journal |last1=Tiller |first1=Jane |last2=Lacaze |first2=Paul |last3=Otlowski |first3=Margaret |date=2022-12-13 |title=The Australian moratorium on genetics and life insurance: evaluating policy compared to Parliamentary recommendations regarding genetic discrimination |url=https://pubmed.ncbi.nlm.nih.gov/36509687/ |journal=Public Health Research & Practice |volume=32 |issue=4 |pages=3242235 |doi=10.17061/phrp3242235 |issn=2204-2091 |pmid=36509687|s2cid=254582496 }} The A-GLIMMER project concluded on 30 June 2023. It published its findings in a report,{{Cite report |last1=Tiller |first1=Jane |last2=Gleeson |first2=Penny |last3=McInerney-Leo |first3=Aideen M. |last4=Keogh |first4=Louise |last5=Nowak |first5=Kristen |last6=Barlow-Stewart |first6=Kristine |last7=Boughtwood |first7=Tiffany |last8=Delatycki |first8=Martin B. |last9=Winship |first9=Ingrid |last10=Otlowski |first10=Margaret |last11=Lacaze |first11=Paul |date=2023-06-29 |title=Final Stakeholder Report of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project. |publisher=Monash University |url=https://bridges.monash.edu/articles/report/_strong_Final_Stakeholder_Report_of_the_strong_em_strong_Australian_Genetics_and_Life_Insurance_Moratorium_Monitoring_the_Effectiveness_and_Response_A-GLIMMER_strong_em_strong_Project_strong_/23564538/1 |language=en |doi=10.26180/23564538}} which found that genetic discrimination continues to occur in Australia, and continues to deter individuals from pursuing genetic testing and participating in genetic research. The report concluded that the moratorium is inadequate to address and prevent genetic discrimination in life insurance, and should be replaced with a legislative model of prohibition. The Project recommended that:

{{boxquote|

1. The Australian Government amend the Disability Discrimination Act 1992 (Cth) ('the Act') to prohibit insurers from using genetic or genomic test results to discriminate between applicants for risk-rated insurance, and consider amendments to the regulation of financial services to ensure insurers are subject to a positive duty to not discriminate.

2. The Australian Government allocate responsibility and appropriate resources to the Australian Human Rights Commission ('AHRC') to enforce, promote, educate and support individuals and all relevant stakeholders to understand and meet the new legal obligations under the Act. The AHRC should consult with a range of genetics and genomics experts and stakeholders to achieve this goal.}}

The Australian government is considering the recommendations in the report. The Assistant Treasurer and Minister for Financial Services, the Hon. Stephen Jones MP, made a statement that{{Cite news |last=Borys |first=Stephanie |date=2023-06-29 |title=Australians skipping genetic screening tests out of fear it will affect life insurance coverage |language=en-AU |work=ABC News |url=https://www.abc.net.au/news/2023-06-30/australians-skipping-genetic-tests-being-used-by-life-insurers/102540960 |access-date=2023-07-05}} "We don't want people to avoid having genetic tests which could detect life threatening conditions because of a fear it may affect access to insurance. Early detection can lead to life saving interventions. That's in everyone's interest."

In November 2023, the Australian Labor Government held a public consultation into options for policy reform in this area.{{Cite web |last=Treasury |first=Department of the |date=2024-02-02 |title=Use of genetic testing results in life insurance underwriting {{!}} Treasury.gov.au |url=https://treasury.gov.au/consultation/c2023-467047 |access-date=2025-03-17 |website=treasury.gov.au |language=en}}{{Cite web |last=Ministers |first=Treasury |date=2023-11-27 |title=Consultation open on the use of genetic testing results in life insurance underwriting {{!}} Treasury Ministers |url=https://ministers.treasury.gov.au/ministers/stephen-jones-2022/media-releases/consultation-open-use-genetic-testing-results-life |access-date=2025-03-17 |website=ministers.treasury.gov.au |language=en}}{{Cite web |last=Ministers |first=Treasury |date=2023-11-27 |title=Press conference, Mural Hall, Parliament House, Canberra {{!}} Treasury Ministers |url=https://ministers.treasury.gov.au/ministers/stephen-jones-2022/transcripts/press-conference-mural-hall-parliament-house-canberra |access-date=2025-03-17 |website=ministers.treasury.gov.au |language=en}} The consultation was open until January 2024. The Treasury received over 1000 submissions, over 97% of which supported a total legislative ban on genetic discrimination in life insurance.{{Cite web |last=Ministers |first=Treasury |date=2024-09-11 |title=Total ban on the use of adverse genetic testing results in life insurance {{!}} Treasury Ministers |url=https://ministers.treasury.gov.au/ministers/stephen-jones-2022/media-releases/total-ban-use-adverse-genetic-testing-results-life |access-date=2025-03-17 |website=ministers.treasury.gov.au |language=en}}

In September 2024, the Hon. Stephen Jones MP, announced that the Labor Government would introduce a total legislative ban on the use of adverse genetic test results by life insurers in underwriting. The Minister stated at the press conference, "Our aim is to have legislation in the parliament this term. We want to see this operating as soon as possible. But can I add to that by saying it is my expectation that most if not all players within the industry will move on a voluntary basis to ensure that these provisions are operating in the context that they offer from here on in.{{Cite web |last=Ministers |first=Treasury |date=2024-09-11 |title=Doorstop interview, Parliament House, Canberra {{!}} Treasury Ministers |url=https://ministers.treasury.gov.au/ministers/stephen-jones-2022/transcripts/doorstop-interview-parliament-house-canberra-8 |access-date=2025-03-18 |website=ministers.treasury.gov.au |language=en}} The Council of Australian Life Insurers (CALI) the current life insurance industry body, joined the press conference and publicly stated its support for the introduction of the legislation.{{Cite web |last=Cheryl |date=2024-09-10 |title=Life insurers welcome strict regulation of industry use of genetic test results |url=https://cali.org.au/life-insurers-welcome-strict-regulation-of-industry-use-of-genetic-test-results/ |access-date=2025-03-18 |website=CALI |language=en-AU}}{{Cite web |last=Arkinstall |first=Shy-ann |date=2024-12-02 |title=CALI urges government action on genetic test results ban |url=https://www.ifa.com.au/risk/35089-cali-urges-government-action-on-genetic-test-results-ban |access-date=2025-03-18 |website=www.ifa.com.au |language=en-gb}}

The legislation was not introduced (or drafted) in the Federal Parliament's 47th term, despite bipartisan support, and the life insurance industry did not move to honour the announced provisions on a voluntary basis. The Government was criticised by the Federal Opposition{{Cite web |last=Brodie |first=Megan |date=2025-02-13 |title=Labor breaks promise on genetic discrimination |url=https://mednews.com.au/labor-betrays-trust-on-genetic-discrimination/ |access-date=2025-03-18 |website=MedNews |language=en-AU}}{{Cite web |last=February 2025 |first=Thursday 13 |title=Joint Media Release: Labor Betrays Australians on Genetic Testing Discrimination |url=https://www.anneruston.com.au/joint_media_release_labor_betrays_australians_genetic_testing |access-date=2025-03-18 |website=Anne Ruston - Senator for South Australia |language=en}}{{Cite web |last=Ford |first=Keith |date=2025-02-14 |title=‘Legislation nowhere to be seen’: Howarth slams slow legislative progress |url=https://www.ifa.com.au/news/35344-legislation-nowhere-to-be-seen-howarth-slams-slow-legislative-progress |access-date=2025-03-18 |website=www.ifa.com.au |language=en-gb}} and members of the independent cross-bench{{Cite web |title=Labor’s legislation backlog leaves genetic discrimination ban stalled |url=https://www.kyleatink.com.au/241127_theaustralian |access-date=2025-03-18 |website=Kylea Tink |language=en}}{{Cite web |date=2025-02-11 |title=AFL star in desperate bid to unlock late father’s medical secrets |url=https://7news.com.au/sport/afl/afl-young-gun-calsher-dear-in-desperate-bid-to-unlock-late-famous-fathers-medical-secrets-c-17687076 |access-date=2025-03-18 |website=7NEWS |language=en}} for failing to introduce legislation as promised within the parliamentary term.

In February 2025, the Labor Government released a second consultation paper on technical aspects of the design of the legislative ban.{{Cite web |last=Treasury |first=Department of the |date=2025-03-14 |title=Ban on the use of adverse genetic testing results in life insurance {{!}} Treasury.gov.au |url=https://treasury.gov.au/consultation/c2025-626785 |access-date=2025-03-18 |website=treasury.gov.au |language=en}} The consultation closed in March 2025. A joint submission led by the lead investigators of the A-GLIMMER project at Monash University was endorsed by over 100 community organisations, including genetic health professionals, researchers, consumer support groups, health and financial services advocacy organisations, professional member organisations and others.{{Cite report |url=https://bridges.monash.edu/articles/report/Joint_submission_to_the_Treasury_consultation_re_design_of_the_ban_on_the_use_of_adverse_genetic_testing_results_in_life_insurance/28551068/1 |title=Joint submission to the Treasury consultation re design of the ban on the use of adverse genetic testing results in life insurance |last=Tiller |first=Jane |date=2025-03-13 |publisher=Monash University |doi=10.26180/28551068.v1 |language=en}} Signatories included the Financial Rights Legal Centre, Australian Medical Association, National Heart Foundation, Lung Foundation, Cancer Council Australia, Australian Genomics, Murdoch Children’s Research Institute, the Australian Alliance for Indigenous Genomics, and others.

Genetic discrimination is a rising issue in Argentina.{{cite report| vauthors = Valdovinos CF |date=2005-11-01|title=Growth, inequality, and social equity in Argentina|url=http://documents.worldbank.org/curated/en/895241468201589540/Growth-inequality-and-social-equity-in-Argentina|language=en|pages=1–4}} Health plans discriminate against those who have disabilities or who have genetic conditions.{{cite journal | vauthors = Penchaszadeh VB | title = Ethical issues in genetics and public health in Latin America with a focus on Argentina | journal = Journal of Community Genetics | volume = 6 | issue = 3 | pages = 223–30 | date = July 2015 | pmid = 25666434 | pmc = 4524838 | doi = 10.1007/s12687-015-0217-5 }} In the past decade, however, National Law 26689 was passed providing patients with the right to not experience discrimination as a result of genetic conditions.

The Universal Declaration on the Human Genome and Human Rights (1997), the International Declaration on Human Genetic Data (2003){{Cite web |title=UNESCO adopts international declaration on human genetic data |url=https://cordis.europa.eu/article/id/21077-unesco-adopts-international-declaration-on-human-genetic-data |access-date=1 June 2023 |website=European Commission}} and the Universal Declaration on Bioethics and Human Rights (2005){{Cite web |date=2015-10-05 |title=UN panel warns against 'designer babies' and eugenics in 'editing' of human DNA {{!}} UN News |url=https://news.un.org/en/story/2015/10/511732 |access-date=2023-06-01 |website=news.un.org |language=en}} are global instruments drawn up by the International Bioethics Committee of UNESCO.

Some people have genes that make them more susceptible to developing a disease as a result of an occupational exposure. For example, workers with beryllium sensitivity and chronic beryllium disease are more likely to carry the gene HLA-DPB1 than workers without these conditions.{{cite report | vauthors = DeBord DG, Schulte P, Butler MA, McCanlies E, Reutman S, Ruder A, Schill A, Schubauer-Berigan M, Schuler C, Weston A | display-authors = 6 | veditors = Tuchman RJ | collaboration = Genetics Working Group | work = National Institute for Occupational Safety and Health (NIOSH) | publisher = Centers for Disease Control and Prevention, U.S. Department for Health and Human Services | date = November 2009 | title = Genetics in the Workplace: Implications for Occupational Safety and Health | location = Washington, D.C. | url = https://www.cdc.gov/niosh/docs/2010-101/pdfs/2010-101.pdf }} By offering optional genetic testing to workers and allowing only the workers to see their own results, employers could protect genetically susceptible individuals from certain occupational diseases. A beryllium manufacturing company initiated a pilot program to test prospective workers for the HLA-DPB1 gene at a university-based laboratory. The company paid for the testing and counseling but received results that did not identify which workers had the gene.

In 1991, the American Medical Association Council on Ethical and Judicial Affairs suggested that the following five conditions must be satisfied in order for genetic screening by an employer to be appropriate:

• The disease must develop so rapidly that monitoring would be ineffective in preventing it.
• The genetic test is highly accurate.
• The genetic variation results in an unusually elevated susceptibility to occupational illness.
• Undue expense is needed to protect susceptible workers by lowering the level of the toxic substance in the workplace.
• The worker must provide informed consent prior to being tested.

Several occupational health screening measures similar to genetic testing are already taking place. For example, in 1978, DuPont reported testing African American applicants for sickle cell trait and restricted these workers from exposure to nitro and amino compounds.{{cite journal | vauthors = Brandt-Rauf PW, Brandt-Rauf SI | title = Genetic testing in the workplace: ethical, legal, and social implications | journal = Annual Review of Public Health | volume = 25 | pages = 139–53 | date = 2004 | pmid = 15015916 | doi = 10.1146/annurev.publhealth.25.101802.123012 | doi-access=free }} However, research indicates that workers or applicants would not take advantage of genetic testing due to fear of discrimination. A 1995 poll of the general public found that over 85% are concerned about access to use of genetic information by insurers and employers.{{cite journal | vauthors = Miller PS | title = Genetic discrimination in the workplace | journal = Genetics in Medicine | volume = 3 | issue = 3 | pages = 165–6 | date = June 2001 | pmid = 11388754 | doi = 10.1097/00125817-200105000-00001 | url = https://zenodo.org/record/1230728 | doi-access = free }} Likewise, in the case of the beryllium manufacturer described above, so few workers participated in the genetic testing that the company decided instead to pursue an "enhanced preventive model of workplace controls."

Some cases have found statistical evidence of genetic differences between human populations, such as mutations within the Duffy blood group.{{cite journal | vauthors = McManus KF, Taravella AM, Henn BM, Bustamante CD, Sikora M, Cornejo OE | title = Population genetic analysis of the DARC locus (Duffy) reveals adaptation from standing variation associated with malaria resistance in humans | journal = PLOS Genetics | volume = 13 | issue = 3 | pages = e1006560 | date = March 2017 | pmid = 28282382 | pmc = 5365118 | doi = 10.1371/journal.pgen.1006560 | editor-first = Hopi E. | editor-last = Hoekstra | doi-access = free }} Yet research looking at 109 genetic markers across 16 populations by Guido Barbujani "does not suggest that the racial subdivision of our species reflects any major discontinuity in our genome".{{cite journal | vauthors = Barbujani G, Magagni A, Minch E, Cavalli-Sforza LL | title = An apportionment of human DNA diversity | journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 94 | issue = 9 | pages = 4516–9 | date = April 1997 | pmid = 9114021 | pmc = 20754 | doi = 10.1073/pnas.94.9.4516 | bibcode = 1997PNAS...94.4516B | doi-access = free }} As genomic research continues to investigate human genetic variation on a large scale, racial genetic discrimination remains a concern for many.{{cite book | vauthors = Haga SB | chapter = Chapter 2 - Overview of Policy, Ethical, and Social Considerations in Genomic and Personalized Medicine |date= January 2017 | title =Genomic and Precision Medicine | edition = third |pages=19–43| veditors = David SP |place=Boston|publisher=Academic Press |doi=10.1016/b978-0-12-800685-6.00005-9|isbn=978-0-12-800685-6 }}

{{See also|Race and health}}

State governments in the United States have attempted to combat racial discrimination by barring instances of discrimination by insurers that involve linking specific genetic conditions to race, such as the sickle cell trait in African Americans. Further, therapeutic interventions or treatments based on genetic variants associated with race can sometimes be inaccurate and lead to negative health outcomes. An example of this has been doctors prescribing an improper dosage of a drug called warfarin prescribed to African American populations, despite research disproving they require a higher dose than white populations. The medical community recognizes that genetic variants—such as predisposition to drug metabolism among others—make up only one facet of a person's health, which is also impacted by their environment and lifestyle.{{Citation|last=Dumitrescu|first=R. G.|title=Chapter 4 - Cancer Genetic Screening and Ethical Considerations for Precision Medicine|date=2017-01-01|url=https://www.sciencedirect.com/science/article/pii/B9780128094112000040|work=Progress and Challenges in Precision Medicine|pages=79–100|editor-last=Verma|editor-first=Mukesh|publisher=Academic Press|language=en|doi=10.1016/b978-0-12-809411-2.00004-0|isbn=978-0-12-809411-2|access-date=2021-03-22|editor2-last=Barh|editor2-first=Debmalya|url-access=subscription}}

In addition, many individuals are concerned with their genetic privacy and worry that they will face discrimination based on their genetic information.{{cite journal | vauthors = Clayton EW, Halverson CM, Sathe NA, Malin BA | title = A systematic literature review of individuals' perspectives on privacy and genetic information in the United States | journal = PLOS ONE | volume = 13 | issue = 10 | pages = e0204417 | date = 2018-10-31 | pmid = 30379944 | pmc = 6209148 | doi = 10.1371/journal.pone.0204417 | bibcode = 2018PLoSO..1304417C | doi-access = free }} These worries may include loss of confidentiality, risk of information being shared with insurance providers, risk of genetic samples being used without their consent, and health-based discrimination more broadly.

Contributing to genomic biobanks can be an additional source of concern for minority populations. Biobanks are collections of biological samples which can include blood, tissue, or DNA from many people. Despite the utility of biobanks to furthering genomic research, minority groups fear that their samples may be used improperly or even be used to strike down an entire culture.{{Cite journal|last1=Abadie|first1=Roberto|last2=Heaney|first2=Kathleen|date=2015|title="We can wipe an entire culture": fears and promises of DNA biobanking among Native Americans|url=http://link.springer.com/10.1007/s10624-015-9391-4|journal=Dialectical Anthropology|language=en|volume=39|issue=3|pages=305–320|doi=10.1007/s10624-015-9391-4|s2cid=142335757|issn=0304-4092|url-access=subscription}} Such was the case when genetic samples were taken from the Havasupai people, a Native American tribe in Arizona. They consented for their samples to provide insight into the prevalence of diabetes in their community, but did not consent to them to investigate links to schizophrenia or provide evolutionary genetic analysis to discredit the tribe's origin beliefs. Misuse of genetic data may create long-lasting distrust towards the medical community.

Some efforts have been made to use genetic testing for reconciliation projects involving people of African descent, which attempt to make social reparations based upon genetic genealogy.{{cite journal | vauthors = Nelson A | title = The social life of DNA: racial reconciliation and institutional morality after the genome | journal = The British Journal of Sociology | volume = 69 | issue = 3 | pages = 522–537 | date = September 2018 | pmid = 30328106 | doi = 10.1111/1468-4446.12607 | doi-access = free }} Though genetic ancestry testing can be a valuable source of information for those seeking connections to their heritage or recognize a new identity, African Americans may feel coerced into genetic testing or unknowingly face discrimination. Participants also have very little control over how their data will be used, including within the medical sphere or the criminal justice system. As such, increased circulation of genetic genealogical data may be harmful for African Americans.

As minority populations are hesitant to contribute their DNA to genomic research, there continues to be a lack of inclusive health information being disseminated and incorporated in medical treatments. Genomic research has been predominantly based upon DNA samples with European heritage, which fails to holistically and accurately describe the complexity of all people's genetics.{{Cite news|title=Lack Of Diversity In Genetic Databases Hampers Research|url=https://www.npr.org/sections/health-shots/2019/08/22/752890414/lack-of-diversity-in-genetic-databases-hampers-research|access-date=2021-04-08|website=NPR.org|language=en}}

Other confounding factors related to diversity such as age, gender, or socioeconomic status may also influence genetic discrimination in addition to race.

According to Jonathan Roberts and his colleagues, the media evokes irrational fear among the public about advances in genetic techniques.{{cite journal | vauthors = Roberts J, Archer L, DeWitt J, Middleton A | title = Popular culture and genetics; friend, foe or something more complex? | journal = European Journal of Medical Genetics | volume = 62 | issue = 5 | pages = 368–375 | date = May 2019 | pmid = 30590173 | pmc = 6626485 | doi = 10.1016/j.ejmg.2018.12.005 }} In a recent study, participants who were prompted to convey their attitudes about unfamiliar scientific concepts relating to genetics ultimately drew conclusions based on examples from popular culture.

Genoism is a neologism coined by Andrew Niccol, director and writer of the 1997 film Gattaca, used to describe unethical and illegal genetic discrimination. Predictions of physical and mental performance are computed via genetics from DNA collected from hair, fingernails, skin flakes, spit swabs, eyelashes, etc. Upon birth, a number of genetically induced characteristics are calculated: physical and intellectual capacity, life expectancy, probable successful diseases, and likely causes of death, all determined via blood samples and genetic testing. Job interviews, health insurance purchasing, and even potential dates can be sized up according to the perceived quality of the person's DNA due to advancements in genome sequencing. This put an ironic twist to Darwin's sexual selection for good genes. According to the movie, "We now have discrimination down to a science."

{{blockquote|My father was right. It didn't matter how much I lied on my resume. My real resume was in my cells. Why should anybody invest all that money to train me when there were a thousand other applicants with a far cleaner profile? Of course, it's illegal to discriminate, 'genoism' it's called. But no one takes the law seriously. If you refuse to disclose, they can always take a sample from a door handle or a handshake, even the saliva on your application form. If in doubt, a legal drug test can just as easily become an illegal peek at your future in the company.|Vincent Freeman (Ethan Hawke)|Gattaca, 1997}}

• Dysgenics
• Gattaca, the most notable film about genetic discrimination
• Genetic privacy
• Human Genome Project
• Health Insurance Portability and Accountability Act
• Genetic Information Nondiscrimination Act
• Americans with Disabilities Act
• Affordable Care Act
• Genetic Discrimination Observatory

{{Reflist}}

• [https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination National Human Genome Research Institute on Genetic Discrimination]
• {{cite news | title= US Blocks Genetic Discrimination | work= BBC News | date=25 April 2008 | url=http://news.bbc.co.uk/2/hi/americas/7366264.stm | access-date=2010-01-04}}
• [https://web.archive.org/web/20160307050955/http://respondgeneticdiscrimination.com/ Respond Genetic Discrimination]

{{Discrimination}}

{{DEFAULTSORT:Genetic Discrimination}}

Category:Human genetics

Category:Eugenics

Category:Medical ethics

Category:Discrimination by type

Category:Science fiction themes