Ethical, Legal, and Moral Questions About Personalized Medicine

Genetic Testing Leads to Tough Questions

A DNA autoradiogram.
A DNA autoradiogram. TEK IMAGE/Getty Images

Most ethical, legal and moral questions that result from the concept of personalized medicine are rooted in the genetic testing needed to make personalized medicine work. In particular, patients who fear they may have inherited a gene specific to a disease or condition need to ask themselves whether they want to know they have that gene.

The Human Genome Project devotes one entire section of its project to studying these types of questions and reviewing possible answers.

Ethical, Legal and Moral Questions Specific to Genetic Testing:

  • Who should have access to personal genetic information?
  • How should personal genetic information be used?
  • Who owns an individual's genetic information?
  • How does personal genetic information remain private?
  • What roles will race or gender play in decisions about what is normal or not?
  • What happens if genetic information is used to discriminate against a person who has been tested?

Ethical, Legal and Moral Questions Specific to Personalized Medicine:

  • Should patients be tested if no treatment is available?
  • Should parents have their children tested for adult-onset diseases?
  • Should genes be tested for behavioral attributes with a goal of treatment for unacceptable behaviors? (And then, what constitutes unacceptable behavior?)
  • How will healthcare professionals be trained to deal with genetic testing and personalized medicine?
  • How will the public be educated about gene testing, personalized medicine, and outcomes?

    Profitability and Personalized Medicine

    A wise patient is aware of the relationship between the dollar, genetic testing, and personalized medicine. Private companies are being started, and research is growing in the area of development of diagnostic tests and treatments for patients, diseases, and conditions using genetic code.

    A web search for "personalized medicine" turns up as many business links as medical links.

    The most potential for medical advancement in personalized medical treatment will probably be found with pharmaceutical drugs. Researchers and drug manufacturers can tailor the development of new drugs to address large segments of people who have similar genetic code abnormalities.

    In contrast to the genetic medicine foundations and companies mentioned above, though, we shouldn't expect larger pharmaceutical companies to step up their development of personalized drugs quickly. To this point, pharmaceutical manufacturers have concentrated on drugs that would address the needs of large populations of people, because that's how they would profit the most. Potential profits among genetically tailored drugs will probably be less because the markets are so much smaller.

    Personalized drugs, once they are researched and developed in larger numbers, will most likely be very expensive, because they will be so specifically tailored. This will give rise to a new question to be added to the list above: What happens when only those with means can afford to purchase these tailored, personalized drugs?

    Learn more about personalized medicine:


    The Human Genome Project U.S. Department of Energy and the National Institutes of Health

    Marc L. Reitman and Eric E. Schadt Pharmacogenetics of metformin response: a step in the path toward personalized medicine (abstract) The Journal of Clinical Investigation

    What is breast cancer? National Institutes of Health

    Continue Reading