Term Paper! (this is definitely the Bad Place)

How are we to the point in the semester where I have to be thinking about a term paper already?

The issue that I will address in my term paper for this semester is genetic testing. There are many ethical questions and potential dilemmas surrounding genetic testing and the information gained from the results of these tests. This issue is relevant to me because I plan on attending graduate school in genetics, specifically genetic counseling. I have been interested in genetics since high school biology, and upon discovering genetic counseling as a potential career, have set my sights there. Thus, the issues of genetic testing are directly relevant to me and my future.

Some of the main issues surrounding genetic testing:

1.      Diseases

a.       Preventing disease

                                                              i.      sometimes the patients will get the disease either way, regardless of the knowledge

                                                            ii.      presymptomatic testing can give some people a window of control (cancers, Alzheimer’s, diabetes) but not for other diseases (Huntington’s, other cancers)

                                                          iii.      free will and responsibility for health and disease, but also we need to avoid genetic fatalism

1.      responsibility (actions, diet, habits, etc.)

2.      genetic fatalism—“I have X gene, so I’m doomed” vs “you could’ve done X to prevent this”

b.      Testing and sick identities

                                                              i.      benefits vs disadvantages of knowing genetic information, if you know about a disease (Huntington’s, Alzheimer’s) some people might identify as “sick” long before they’re actually affected, is the burden of the information worth it?

                                                            ii.      Preventing suicide by not knowing

1.      statistics of patients with Huntington’s and suicide, patients wanting control/not wanting the suffering that comes with disease

2.      The decision to be tested/order genetic test(s)

a.       Testing as self-interest

                                                              i.      preventative measures possible with the information, not possible without the information, but is it worth the stress/worry to have that knowledge

                                                            ii.      Testing only to hear good news

1.      “when people say they want this test to find out if they have the gene so they can make decisions, they really want to find out that they don’t have it” (Pence 371).

2.      Testing as a duty to one’s family

a.       your own genetics and genetic fate don’t only affect you; it also affects your family (nuclear, extended, and future)

3.      Testing one’s family by testing oneself

a.       by testing yourself you’re also testing your family; the information doesn’t only affect you

4.      Testing to find biological parents and siblings

a.       genetic information is powerful; you could find relatives without meaning to

3.      Testing responsibly

a.       Direct to consumer (DTC) testing

                                                              i.      assure the quality/reliability of the test and the information before purchasing if not an official medical test

                                                            ii.      lack of counseling available

                                                          iii.      news you didn’t want/weren’t expecting (disease, family, etc.)

                                                          iv.      companies doing genetic testing for profit instead of for the benefit of the patients

b.      Testing only with good counseling

                                                              i.      genetic testing should only be available with good counseling

                                                            ii.      issues with DTC testing, and general lack of accessible genetic counselors

4.      Genetic research and other implications

a.       Premature announcements and oversimplifications (as well as the lack of knowledge about certain genes, disorders, etc.)

                                                              i.      early diagnoses could be problematic if they are incorrect

                                                            ii.      further diagnoses could be problematic as the science develops and the research comes forward

b.      Mitochondrial donation therapy, gene therapy, CRISPR, embryo repair

                                                              i.      where to draw the line? For what can we use the technology for good, and if we allow certain procedures/research developments, then will those be abused?

                                                            ii.      research would probably need to be done on embryos (additional set of ethical issues)

c.       Eugenics

                                                              i.      testing to eliminate/eradicate/minimize certain genes, characteristics, diseases, etc. vs testing to selectively choose other “desirable” genes (sex, hair, eye color, intelligence, etc.)

 

References

Andrews, L. B., Fullarton, J. E., Holtzman, N. A., & Motulsky, A. G. (Eds.). (1994). Social, Legal, and Ethical Implications of Genetic Testing. In Assessing genetic risks: Implications for health and social policy (pp. 247-290). Washington (DC): National Academies Press.

Fulda, K. G., & Lykens, K. (2006). Ethical issues in predictive genetic testing: a public health perspective. Journal of medical ethics, 32(3), 143–147. https://doi.org/10.1136/jme.2004.010272

Pence, G. (2021). Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy Wexler, Angelina Jolie, Diabetes and Alzheimer's. In Medical Ethics: Accounts of Ground-Breaking Cases (9th ed., pp. 362-390). New York, NY: McGraw Hill.

Than, N. G., & Papp, Z. (2017). Ethical issues in genetic counseling. Best Practice & Research Clinical Obstetrics & Gynaecology, 43, 32-49. https://doi.org/10.1016/j.bpobgyn.2017.01.005