Genetic discrimination
The idea of genetic discrimination has been combated since the 1947 Nuremberg Code that was created shortly after WWII, during which thousands of racialized and disabled victims died in tests conducted in Germany.
[10] The legislation bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions.
[12] Prior to the 2008 GINA Act, individuals could be denied insurance, either partially or fully, based on genetic tests they had received.
[14] 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.
[15] 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.
Therefore, patients are enjoying less protection against genetic discrimination in comparison with other peer countries, such as France, Switzerland, Australia and the United Kingdom.
[12] 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.
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.
[27] 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.
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.
[35] 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.
[44] 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 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.
In its 2018 report,[55] 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.
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 Assistant Treasurer and Minister for Financial Services, Stephen Jones, made a statement that[65] "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.
[67] 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.
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.
[72] 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.
[73] 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".
Further, therapeutic interventions or treatments based on genetic variants associated with race can sometimes be inaccurate and lead to negative health outcomes.
[75] 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.
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.
[79] 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.
[80] Other confounding factors related to diversity such as age, gender, or socioeconomic status may also influence genetic discrimination in addition to race.
[81] 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.
[81] 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.
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.
