Considering the ethics of personalized medicine

By Andria Bianchi

Personalized medicine is commonly defined as a type of medical care that is managed in accordance with one’s personal genome. The idea is that if a person’s genetic variants are known, then clinicians will be able to more accurately determine what types of treatment(s) will improve health outcomes. Some examples of personalized medicine are “using targeted therapies to treat specific types of cancer cells, such as human epidermal growth factor receptor 2 (HER2)-positive breast cancer cells, or using tumor market testing to help diagnose cancer.”  Personalized medicine is consequentialist and individualistic—its primary purpose is to determine the best medical consequence for particular individuals. The hope is that people will ultimately be able to pursue treatments that will be effective for them and they will not need to undergo unnecessary ones; this type of medicine eliminates a “one size fits all” approach.

Personalized medicine is typically discussed in a positive light. With an increasing amount of health technologies being developed to treat health conditions, knowing more information about a person’s genetic make-up can help when it comes to creating a care plan. Alongside the many benefits of personalized medicine, however, some ethical concerns have also been discussed in the academic literature. It is important to familiarize ourselves with the ethical benefits and potential challenges to ensure that we develop ethically defensible processes and policies.

One of the primary ethical strengths of personalized medicine is, of course, that people will be able to receive treatments that are more likely to benefit them—this responds to the clinical duty to do the most amount of benefit (and the least amount of harm). Also, in a clinical setting that uses personalized medicine, patients may more immediately trust their clinicians’ recommendations since they will be developed based on their specific genetic variants. Furthermore, personalized medicine may be helpful from an economic viability standpoint. Many resources are wasted (from a financial perspective) by giving people treatments that do not work; it would be more economically beneficial to only fund and provide people with treatments that are likely to be effective. Relatedly, people who undergo various treatments to try to improve and/or cure their medical condition(s) may require multiple hospital stays, which is costly.

In addition to these positive considerations, one of the main ethical questions/concerns is whether personalized medicine is just (and the principle of justice is one of the primary ethical principles in bioethics). Will everyone around the globe be able to afford and access diagnostic tests and necessary treatments? Is it possible that only the wealthiest people and/or nations will be able to afford certain tests and medicines, thereby increasing the inequality that exists amongst certain groups?

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Another concern surrounds that of privacy and confidentiality. Who will be able to access personal information and what are the potential consequences? Moreover, is it possible that clinical teams, insurance companies, etc. may eventually require people to undergo genetic testing? If so, then this may influence a person’s right to make autonomous decisions about the type of testing and care that they need, specifically because they would need to undergo such testing in order to be insured/receive medical treatment.

The ethics of incidental findings pose another challenge of personalized medicine. If a person undergoes a medical test in the spirit of receiving personalized care, and unexpected information about their health condition/overall health becomes known, then what are our ethical obligations? Should a person always have a choice to learn about and/or to remain ignorant about incidental findings? What should we do if an incidental finding could potentially influence a person’s family member(s)?

Finally, as noted by Nicolls et al., personalized medicine is based on genetic characteristics that are internal to an individual—external influences (e.g. poverty, environmental factors) are not considered, even though they may have a significant impact on a person’s health. Perhaps we should initially focus our energy and resources on improving these external influences/health-related factors more than internal ones.

The ethical benefits of personalized medicine may, from many perspectives, outweigh potential vulnerabilities. As our health technologies and approaches to medicine continue to advance and change, however, it is important to be cognizant of, reflect upon, and mitigate potential concerns.

Andria Bianchi is a Bioethicist at the University Health Network, a PhD Candidate at the University of Waterloo, and a board member of the Canadian Bioethics Society.