Every advancement in gene testing brings scientists a step closer to exploring the far extents within the medical field. Gene testing has helped the field of medicine, science, and public health in realizing the extent to which it can prove useful. However, there have been several issues related to public health, social policies, and medicine that have led to various unfavorable circumstances. One of the major ethical issues related to this is whether people allow the use of their tests for the purpose of gene testing or not. Should individuals be enabled to restrict access to their test results? Other than this, one of the major issues can be posed to an individual is the threat of having these results lead to a third party, such as an insurer or employer1. This leak could jeopardize an individual’s life and invite an unconventional form of discrimination towards them, based on their genotype.
Discrimination on the grounds of one’s genotype can result in the construction of various barriers that might make it harder for the individual to exist. The answers to the ethical issues related to gene testing reside in the four significant factors of legal and ethical principles that are based on autonomy, equity, and privacy. An insight or review into these principles can elicit a starting point that can assist the control people to decide whether they should undergo gene testing or not, and if so, to what degree can their results be utilized and by whom.
Gene Testing and Ethical Autonomy
Taking the perspective of autonomy, the ethical principle elaborates the significance granted to the power of self-governance, self-rule, and self-determination vested in an individual, enabling them to make decisions based on their willingness. The moral, legal and social norms value the validity of autonomous agents in society as well. In terms of genet testing, an individual is able to make decisions based on their elected means of controlling their destiny, instead of being reliant on genetic information to describe them2. Respecting an individual on grounds of autonomy also indicates the rights of an individual in regards to their control over the genetic material and the information gained through analysis of it. Although, as ideal, as it can be in terms of safeguarding an individual’s rights, autonomy in society is still not absolute. A common example of this is available in the act of preventing any serious harm to others, the test for phenylketonuria, as well as hypothyroidism, is absolute for newborns.
A similar scenario consults various other implications and the misconduct affiliated with the usage of genetic information without the consent of an individual. Behavior such as this is in clear violation of ethical boundaries since it bypasses an individual’s right to privacy, confidentiality, and equity3. These tests that could have offered medical science an exemplary edge in the market, if approached properly through an ethical channel.
Genetic testing presently has provided various benefits towards scientific breakthroughs in the fields of public health, social standards, and medicine, but also poses a serious threat towards cultivating information based on individuals and exposing them to the risk of being categorized in society on basis of their genes. The use of information in a manner such as this is in violation of ethical and legal principles. Respecting an individual on grounds of autonomy also indicates the rights of an individual in regards to their control over the genetic material and the information gained through analysis of it. Although, as ideal, as it can be in terms of safeguarding an individual’s rights, autonomy in society is still not absolute. People should be consulted if they should undergo gene testing or not, and if so, to what degree can their results be utilized and by whom.
Sándor J. Genetic testing between private and public interests: ethical and legal implications. Eur J Public Health. 2016;26(suppl_1). doi:10.1093/eurpub/ckw170.079.
Hanssen I. From human ability to ethical principle: An intercultural perspective on autonomy. Medicine, Health Care and Philosophy. 2005;7(3):269-279. doi:10.1007/s11019-004-9032-1.
Ross L. Ethical and policy issues in genetic testing. Pancreatology. 2001;1(6):576-580. doi:10.1159/000055866.