Personalized medicine is a fairly new concept that emerged in the past decade. It has been showing great promise for the patients involved and has also been a rapidly growing field. Personalized medicine gets rid of the concept of ‘one size fits all.’ Rather it introduces the idea of ‘the right drug for the right patient and at the right time.’ Personalized medicine involves sequencing part or the whole genome to determine diseases or specific characteristics of a patient at the molecular level. For example, the type of information provided from the genome sequencing can determine if the patient has slow, normal or a fast metabolism. This would ensure practitioners deliver the correct dose of medicine to each individual. Those who turn out to be slow metabolizers are not being overdosed and those who are fast metabolizers are not being underdosed and thus reducing adverse drug effects. You may be thinking this concept sounds great, what ethical issues could possibly arise from this?
It turns out there are some
negative effects of personalized medicine: High cost, inequality in health
care, violation of privacy, discrimination, negative effect in physician-patient
relationship and stigmatization exploitation. The high cost of medicines and
healthcare is most concerning when considering developing countries, as their benefits
would be limited due to limited available resources. When conducting research, it
is easier for researchers to favor the side of financial resources. Thus, leading
to inappropriate health care, making it complicated and potentially worsening
inequalities and participant variation in healthcare delivery. For personalized
medicine to be effective, it requires genetic information to be gathered from
all ethnic and racial groups. Otherwise, these groups would be receiving suboptimal
benefits from personalized medicine.
Biobanks have become necessary
establishments as personalized medicine has emerged and types of specimens that
require to be stored have increased. This has raised ethical concerns regarding
sample collection, storage, use, informed consent, identifiability of specimens,
the sharing of samples, re-identification and privacy and confidentiality. This
has also been a concern regarding the needs to better physician-patient
relationships and comprehensive patient’s awareness. These decisions are a joint
responsibility by the patient and the physician, as some of these therapeutic decisions
require a greater level of literacy. Genetic science is complicated, and misapprehension
may cause ambiguity in the test results and their meaning and thus reducing the
importance of informed consent, leading to a decrease in individual benefit. Personalized
medicine has been proposed in providing public health care services from an individual
genetic’s information, meaning that individuals privacy and confidentiality
could be at risk.
Implementing personalized medicine
involves significant delays due to limited knowledge and the need for extensive
genomic research. Ethical challenges include ensuring equity in drug access and
genetic testing, protecting confidentiality, and respecting individual
autonomy. Balancing societal benefits with cultural and religious sensitivities
is crucial to avoid discrimination. There is a pressing need for accurate tools
to evaluate clinical trials and regulate genetic information use, supported by
robust frameworks integrating ethical considerations into research and
healthcare. Strategic planning, informed consent, and ethical monitoring are
essential to address these challenges and guide the integration of personalized
medicine into routine practice.
Salari, P., & Larijani, B.
(2017). Ethical Issues Surrounding Personalized Medicine: A Literature
Review. Acta medica Iranica, 55(3), 209–217.
Hey I remember learning about this in genetics last year!!! One of my concerns on personalized medicine is how can the information gathered be used, outside of the treatment? I love the idea of having more personalized care, especially for minorities. I remember during Covid-19, there was a large amount of people of color who got sick and were told by their doctor to go home and come back if they experienced symptoms like blue lips. These symptoms are less likely to show on poc patients than white patients. I hope we can figure out the ethical and inequality issues so that we can start helping everyone better.
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ReplyDeleteI agree that misuse of this genetic information and potential violations of privacy are major concerns of personalized medicine. A possible step that we could take is to first identify and contact patients or their families if the patient unknowingly had their specimens donated to a biobank. Similar to osteological projects that are giving personhood to bones from anthropological and medical collections that were obtained unethically, we could use a similar approach to identify and offer these people and their families an actual chance to give their informed consent and an option to withdraw. For example, I saw a poster presentation from a CU Anschutz student remedying the campus' skeletal collection: "Returning Personhood to a Medical School Osteological Collection Utilizing Forensic Methods" by Almond H. McKinley, Paul E. Morse, Michala K. Stock, and Caley M. Orr. In short, McKinley et al. (2024) is creating a database that identifies each individual based on characteristic bone structures rather than continuing to leave them as unidentified specimens. The best step that we can take is setting precedents to acknowledge individuals who unknowingly contributed to our healthcare and be as transparent about the process as possible before these ethical issues spiral out of control, like the situation with the bone banks.
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