The Issue Of Morality And Responsibility Related To Genetic Medicine

In the past, genetic diseases such as cancer, diabetes, high blood pressure, etc. were considered non-preventable or even non-treatable. The latter was the consequence of the common belief they were beyond the individual’s control. Fortunately, genetic medicine is making a step forward to challenge this assumption. Advances in medicine, especially genetic testing, gives a rise to a possibility to test for genetic risk factors responsible for different diseases and take measures to prevent or treat them.

Furthermore, not so far from today, it will be possible to sequence the whole human genome for less than 1000 dollars, which makes it easily accessible to public. Putting it that way, it seems like a match made in heaven, but there is elephant in the room and it can’t be ignored - is putting genetic diseases within individuals control a good thing because it will allow them to live healthier lives or its just unfair to put pressure on them that is a must to undergo genetic testing and take steps to reduce the risk even though they did not choose their genes? Responsibility for health is linked to concept of moral agent, which is a person who can discern right from wrong and to be held accountable for his or her own actions. E. g. professional athletes using forbidden substances – they are aware of the consequences and should be held accountable for the violation. Talking about responsibility, we should differentiate moral from casual responsibility. One can be held morally responsible over things one has control over, but some outcomes can be morally excusable or justifiable, and it depends on the situation, age, mental disability, knowledge. Responsibility for one’s health is complex affair, because many factors can be included (individuals life choices, genetics, environmental factors) But like for everything, people have divided opinions, so there are two sides concerning moral responsibility of individuals roles in their own health.

Supporters have two basic arguments for treating individuals as responsible for their health – utilitarian and fairness argument. Utilitarian argument refers individuals as at least partly responsible for his/her health status to motivate them to reduce risk of developing diseases, while fairness refers individuals as responsible as the level of causing their own problems (e. g. giving individuals with alcoholic liver cirrhosis lower priority on transplantation). On the other hand, there are opposers of this theory. Their main argument is that there are different factors outside of the person’s control, and diseases could arise from complex interplay between those factors. Also, their objection is that it’s not allowed to professionally discriminate people with lifestyle-related diseases, or even stigmatize them because it’s just another form of blaming the sick which causes unnecessary psychological suffering. The debate concerning health responsibility goes deeper.

Let’s say that individual should be held responsible for taking effective action to reduce health risks related to genetic susceptibilities to diseases (excluding diseases beyond our control - Alzheimer’s dementia or Huntington’s disease), but would it be fair to hold all people equally responsible? Majority of people don’t have the same possibilities as, for example, Angelina Jolie. They differ in their ability to control risks – fewer access to health care, less education, low social status. Also, can individuals be held equally morally responsible for developing diseases based on life style and genetic diseases (because we don’t choose our genes)? We can’t “put in the same basket” smoker who developed lung cancer, because he knew the risks, and woman who tested positive to BRCA mutations accountable for breast cancer, because it’s not her fault she inherited those genes. Genetic risks are different from other health risks. There were many tries of implementing genetic responsibility of individual as public policies.

For example, one of proposed the strategies consisted higher health insurances and fewer employment possibilities for individuals that tested positive for certain genetic risk factors and didn’t do anything to reduce the risk of developing disease. Latter didn’t last long because people can’t be discriminated based on their genetic background. Taking that into account, in 2008. , the USA enacted GINA (Genetic Information Nondiscrimination Act) which prohibited using results of genetic testing in employment decisions. They weren’t the only one, because later other countries have also statutes the ban. Beside that strategy, there were also many other, such as taxation, organ transplant de-prioritization, social stigma, and moral praise. None of mentioned showed positive outcome. Even though many arguments were debated for both sides, there is little that a society can or should do to encourage individuals to take effective action in response to their genetic risks factors.

15 Jun 2020
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