What Are Some Issues In Gene Therapy?

We saw in Choosing Targets for Gene Therapy and Challenges in Gene Therapy that gene therapy research is complex and has many variables. Though several clinical trials have shown promising results, much more research is needed to guarantee the safety and efficiency of gene therapy procedures. As gene therapy comes closer to becoming a medical treatment for genetic diseases, other ethical, legal, and social issues must be kept in mind.

What are the possible implications of gene therapy research to society? All of us - researchers, policymakers and the public - have a responsibility to explore the potential effects of gene therapy research on our lives so that we can make informed decisions.

For each new application of gene therapy research, we must consider:

  • What are the benefits?
  • What are the risks?
  • Whom will the technology help? Whom will it potentially hurt?
  • What does gene therapy mean for me? For my family? For the people in my community?
  • Why might others not share my view?
Ethical, legal and social issues

There are several types of issues to consider as we think about gene therapy:

Morals Ethical issues ask us to consider the potential moral outcomes of gene therapy research.


Legal Legal issues require researchers and the public to help policymakers decide whether and how gene therapy research should be regulated by the government.


Social Social issues involve the impact of gene therapy research on society as a whole.


Some questions to ponder
  • When should gene therapy be used? Should it be used to treat critically ill patients? Should it be used to treat babies and children?
  • What effect would gene therapy have on future generations if germline (reproductive) cells were genetically altered? How might this alteration affect human variation?
  • Who should decide what are "good" or "bad" uses of genetic modifications? How do you define "normal" with regard to human beings?
  • What if we could alter human traits not associated with disease? Would it be okay to use gene therapy to improve or enhance a person's genetic profile?
  • Who will have access to gene therapy, treatments and long-term follow-ups? Will gene therapy and genetic enhancements create an advantage for those who can afford it?

The questions raised here have no clear right or wrong answer. Your responses will depend on your values, as well as on the opinions of those around you.

NCRR/SEPA

Supported by a Science Education Partnership Award (SEPA) [No. 1 R25 RR16291-01] from the National Center for Research Resources, a component of the National Institutes of Health, Department of Health and Human Services. The contents provided here are solely the responsibility of the authors and do not necessarily represent the official views of NCRR or NIH.
Some Definitions

eth-i-cal: (adj.) 1. Relating to morals, especially as concerning human conduct. 2. Morally correct.

le-gal: (adj.) 1. Of or based on law. 2. Appointed or required by law. 3. Permitted by law.

so-cial: (adj.) 1. Of or relating to society and its organization. 2. Concerned with the mutual relations of human beings. 3. Living in organized communities.

pol-i-cy: (n.) 1. Course or principle of action adopted or proposed by a government, party, business or individual, etc.

Definitions adapted from the Oxford Desk Dictionary and Thesaurus.


Step Into Someone Else's Shoes!
shoes

Would your views be the same if you were a different person? How might they change if you .

. had a medical condition that gene therapy research might someday benefit?

. knew a family member or close friend with such a medical condition?

. worked as a research scientist?

. were a prominent religious leader?

. were a policymaker involved in making laws?

Can you think of other people who would have a special interest in gene therapy research? How might their views differ from yours?