Increasingly, technological change is raising serious ethical and moral issues:
gene mapping of humans, genetic cloning, stem cell research, and so on. Life
support technology also raises serious ethical issues in medical decisions.There
have been many discussions around the ethical and moral implications of gene
mapping.I have watched patients and families struggle with decisions and
implications genetic testing.There are reasons to test, not to test, when to test,
and what to do with those results.
Families everywhere owe a debt of gratitude to Mary-Claire King.“As a young
assistant professor, Dr. Mary-Claire King began studying families devastated by
breast cancer. The genetics of these families led her to BRCA1—a gene that can
have inherited mutations that cause breast and ovarian cancer”(National Cancer
Institute, 2021).In 1995 a second gene, BRCA 2 was discovered (National
Cancer Institute, 2021b).These two genes were the first to be linked to
hereditary cancers and the advent of cancer genetic testing.Genetic testing is
now available not only available for breast cancer, but also ovarian, colon,
kidney cancer, stomach, pancreatic, and urological cancers.
One ethical concern related to genetic testing is the timing of testing for heredity
of cancers.Most of the risk of developing a familial genetic cancer related to
BRCA1 or BRCA II genes occurs when a patient is older.“The median age
ofBRCAcarriers at diagnosis of invasive breast cancer is 40 years (15
)
compared with 61 years in the general population” (Lee et al., 2017).Genetic
testing may then be deferred until the patient is an adult and more equipped to
handle the results of testing.In some cases, genetic testing must be done early
as onset of disease occurs in childhood and you do not want to miss the
opportunity to take preventative steps.Patients with known gene mutations that
make them more susceptible to cancer can make choices that include
prophylactic surgery, enhanced cancer screenings, and selective embryo
implantation.Those with known cancer diagnosis can be treated with drugs that
are more effective in treating cancer caused by a gene mutation.
My daughter was lucky enough to go to a high school with many outstanding
science classes.Her sophomore year she took a genetic ethical issues class.Her
teacher, Sister Mary Jane, asked the class to consider the following genetic
testing question: “You are counseling identical twins with a father with a known
fatal neurological illness.One twin wishes to have genetic counseling and
testing for this illness and the other does not.How do you proceed?”Identical
twins have identical DNA.There is no right answer in this situation.It was
interesting to listen to the thoughts of the class.I had two daughters take this
class and years later the children and their parents still talk about this dilemma.
Many genetic testing programs will also recommend patients consider obtaining
life insurance policies prior to genetic testing.The GINA Act of 2008 prevents
health insurance companies and employers from discriminating against patients
based on genetic testing results, but it does not protect you from life insurance
premiums (Office for Civil Rights (OCR, 2008).Many facilities hold genetic
testing in separate areas of the chart and do not release them unless the request
specifically approves the release of genetic testing.Interoperability between
electronic medical record systems may soon prevent the sequestering of genetic
testing information.
Genetic testing is expanding and the ethical considerations surrounding how to
use the results of that testing are growing just as rapidly.
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References
Lee, M. V., Katabathina, V. S., Bowerson, M. L., Mityul, M. I., Shetty, A. S.,
Elsayes, K. M., Balachandran, A., Bhosale, P. R., McCullough, A. E., &
Menias, C. O. (2017). BRCA-associated Cancers: Role of Imaging in
Screening, Diagnosis, and Management.RadioGraphics,37(4), 1005–
1023. https://doi.org/10.1148/rg.2017160144
National Cancer Institute. (2021a, July 5).Cancer Research Starts Here -
National Cancer Institute. Www.cancer.gov.
https://www.cancer.gov/news-events/nca50/stories/understanding-cancer
National Cancer Institute. (2021b, July 7).Mary-Claire King, Ph.D.Division of
Cancer Prevention.
https://prevention.cancer.gov/about-dcp/commemoration-50th/mary-
claire-king-phd
Office for Civil Rights (OCR. (2008, May 7).Genetic Information. HHS.gov.
https://www.hhs.gov/hipaa/for-professionals/special-topics/genetic-
information/index.html
