Introduction.
Genetic information has been the subject of much controversy within technology and ethics. In particular, the debate has revolved around the rights of the individual providing the genetic samples. Most practitioners agree that there should be more nuance to the legality, ethics, and process of collecting genetic samples from individuals. There are two main sentiments within the genetic information controversy. The progressive sentiment focuses on the benefits of collecting genetic information from individuals and populations. The conservatism sentiment looks to the inevitable infringement of the individual’s moral right to withhold genetic information. This paper sides with the conservatism sentiment by arguing that individuals must retain their right to privacy with respect to their genetic information. in addition, this paper concludes that the individual falls under no moral obligation to disclose their genetic information to third parties.
The right to one’s privacy with respect to their genetic information is a fundamental right held by any individual and superseded by none. That is, no recognized human right supersedes the individual’s right to their genetic privacy. Even the right to life- were we to assume that another individual’s genetic information could save another person’s life- does not supersede the right to one’s privacy of their genetic information. Genetic information, at its core, is an abstract possession of the individual to whom it belongs. The only exception to this rule is a gray one, which pertains to instances where an individual has expressly allowed a third party to collect their genetic information. According to Chadwick (2008, p.162), the doctrines concerning the collection of genetic information are far from adequate. They are inadequate to protect the individual from misappropriating their genetic information. For instance, an individual could choose to provide their genetic details but is limited in their knowledge of how the third party intends to use their genetic information. Without a contract that absolutely separates the ownership of the genetic information from the individual that provides it, one must conclude that there can be no right higher than an individual’s right to one’s privacy of genetic information. To that end, no individual can be morally obligated to provide their own genetic information to a third party.
Individuals are morally obligated to protect themselves and their families from harm. Such harm can be caused by allowing third parties to access and retain one’s genetic information. An individual is first and foremost responsible for their own self. His self pertains not just to his body and mind but also to his freedom. This argument is not just relevant; it is also important. This is because it contradicts the proposition that an individual could be morally obligated to provide genetic information about themselves. Allowing third parties to collect one’s genetic information has been linked to a number of severe disadvantages. First, insurance companies may decline to offer insurance premiums to individuals diagnosed with certain illnesses, such as cystic fibrosis and breast cancer (Evans et al., 2001, p. 1053-1054). This means that the procurement of genetic information may actually negatively impact the quality of life for the individual it was procured from. Secondly, the knowledge of mutations that exist in minorities has- in the past, been used to discriminate against minorities. This shows that there is an actual and severe disadvantage to be accrued if one decides to share their genetic information. Insurance companies will decline to offer premiums regardless of whether the disease has manifested or is unlikely to manifest. That is, an individual applying for an insurance premium will not just be judged by their genetic makeup but by the genetic makeup of known relatives. Some diseases are hereditary or genetically prevalent in a family, meaning that entire families could be denied insurance premiums (Fulda and Lykens, 2006, p.143). Based on this information, an individual could be argued to be morally obligated to protect their genetic information and that of their families. And this moral obligation cannot coexist with that of being required to provide one’s genetic information to third parties.
There is no moral connection between harming others and keeping one’s genetic information private. To understand this concept, it is necessary to apply an abstract example. Person A’s life, property, or freedom are in jeopardy. Person B is an ordinary person whose genetic information could save Person A from losing their life, property, or freedom. The solution in this conundrum cannot be derived by sacrificing Person B’s genetic information. More importantly, there can be no moral obligation placed on person B to reveal their genetic information. The information being his- and only his, is not an object that can be separated from his ownership. He reserves exclusive rights to his private genetic information, and no standard or moral imperative can supersede the right to one’s private information. This means that regardless of the perceived moral significance of letting an individual suffer or die, the consequence cannot be attached to the privacy of one’s information as its cause. Everyone is entitled to private ownership of their genetic information because it pertains to them and only them. Based on this principle, it would be absurd to conclude that there is a moral obligation to provide a third party with one’s genetic information for any reason. If harm to others is not a strong enough justification, then no justification may be applied to deprive an individual of the right to privacy of their information. Thus, no good and consistent system of ethics developed by the human mind can impose a moral obligation upon the individual to share their private genetic information with third parties.
Possibly the most potent argument opposing the individual right to privacy to one’s genetic information is the utilitarian argument. The utilitarian argument focuses on the maximum good attainable for the most people in any situation (Mulgan, 2014, .n.p.). As per the principles of utilitarianism, infringing upon an individual’s right to privacy of their genetic information produces a higher maximum good for society as a whole as opposed to letting individuals keep their genetic information. Third parties such as insurance companies could, for instance, argue that it is imperative to have the genetic records of those seeking insurance premiums. For insurance companies, such information could prevent huge losses and allow more people to access insurance. Fortunately, the concept of maximum good is a bit convoluted because it does not consider the individual’s happiness or contentment. At its core, utilitarianism must ignore the needs of the individual in favor of the group. This approach by utilitarianism does not endear itself to individualists who argue that the individual must be treated as a distinct entity and not as a fraction of a homogenous whole. And it is true and valid; the individual must be considered as a rational and complete entity whose life conditions cannot be reduced to the properties of a group of people. The individual is just as important as the group, and the freedoms enjoyed by the group cannot logically supersede the individual’s rights. To that end, the maximum good is not a sufficient reason to deprive the individual of their personal and inalienable rights. This means that an individual cannot be deprived of their right to privacy because the overall outcome would benefit human society.
The fact that the utilitarian argument is the strongest defense of depriving individuals of their right to genetic privacy is a testament to the weakness of the overall argument. One’s right to the privacy of their genetic information is a right that stands as high as all human rights and cannot be superseded by any circumstance. Even when genetic testing is done in the name of posterity, most of the illnesses or conditions being tested for are incurable. In addition, the cost of divulging genetic information is tangible to the individual, while the benefits are far in the future and never guaranteed. The various pitfalls associated with sharing one’s private genetic information practically absolve the individual of any potential responsibility to act in a utilitarian manner. The individual is allowed to deliberately provide the private genetic information but should not expected to. In essence, no individual can and should be morally obligated to provide their own genetic information to a third party.
Conclusion.
To even consider that an individual could be obligated to bring potential harm to themselves and their families is an absurd argument, to say the least. An individual must, at all times, retain ownership of their private information. This is because the right to privacy of one’s information is a fundamental right that is inalienable to the individual. In the same way that an individual cannot be deprived of ownership of their body, they cannot be deprived ownership of their private information. When that is coupled with the failure of the utilitarian argument to consider the individual, it becomes clear that the right to privacy of one’s genetic information is based on solid argumentation. Consequently, an individual cannot be morally obligated to share their own genetic information with third parties.
References
Chadwick, R. (2008). Genetic testing and screening. The Cambridge Textbook of Bioethics, 160.
Evans, J. P., Skrzynia, C., & Burke, W. (2001). The complexities of predictive genetic testing. Bmj, 322(7293), 1052-1056.
Fulda, K. G., & Lykens, K. (2006). Ethical issues in predictive genetic testing: a public health perspective. Journal of Medical Ethics, 32(3), 143-147.
Mulgan, T. (2014). Understanding utilitarianism. Routledge.
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