Ethics of Genetic Testing (Problem Based Learning)
In Problem based learning, you are presented with a scenario in which there is a problem which needs to be addressed.
You are then to describe the problem, suggest multiple approaches to solving the problem, take one of those approaches and list the possible outcomes of that solution, and finally fully evaluate each outcome.
There is a word document attached to this post which contains the PBL for this week dealing with Huntington’s disease and genetic testing.
ETHICS OF GENETICS TESTING
Genetic testing seeks to identify the presence of mutations in genes and chromosomes that have been linked to certain diseases and conditions.
Lab technicians screen samples of an individual’s tissue, blood, or saliva for a suspected DNA mutation to confirm a diagnosis or suggest a predisposition to disease.
They can also look for the presence or absence of certain proteins that would indicate abnormal gene function.
Some tests use short pieces of DNA (called probes) to search for complementary sequences among the 3 billion base pairs of an individual’s genome. If a mutated sequence is found, the probe will bind to it and flag the mutation.
The most widespread form of testing for genetic disorders is newborn screening, through which several million newborns in the U.S. alone each year are tested for abnormal or missing gene products.
Another form of testing, carrier testing, helps couples learn if they carry a recessive allele for inherited disorders that they might pass on to their children.
But the form that attracts the most scrutiny is predictive gene testing, which seeks to identify people at risk of getting a disease before any symptoms are present.
Tests are already in use for a range of conditions that include amyotrophic lateral sclerosis (ALS), Alzheimer’s disease, inherited breast and ovarian cancers, cystic fibrosis, Huntington’s disease, and Tay-Sachs disease.
In some cases, lifestyle changes or medical interventions can reduce the likelihood of a disease developing. However, for many genetic disorders, there are no treatment options.
People have many different reasons for taking a genetic test. A negative test result for a person with a family history of genetic disease can offer a sense of relief. If a mutation is found, a person may be able to change certain health habits or receive early treatment to help prevent or slow the onset of disease.
Even if there is no treatment option, just knowing about the disease might help people make important planning decisions about their family, insurance coverage, and career.
However, there are reasons why someone might not want to be tested. Current tests cannot entirely assess someone’s disease risk. For example, most diseases are a complex interplay of genetic, lifestyle, and environmental factors.
Test results may provide some people with false assurance or needlessly alarm others who might never actually get a disease. If a person learns that he or she is predisposed to a disease for which no cure or prevention exists, that person or his or her family members might fall victim to anxiety or depression.
Further, testing positive for the presence of a disease gene might provoke a difficult, life-altering decision: Should the person have preventive treatment, such as radical surgery, to lower the risk of actually contracting the disease?
Genetic disease testing also raises ethical considerations relating to privacy concerns. For example, if you were at higher risk for developing a condition like Alzheimer’s disease or breast cancer, while you might want to know about it, how might other members in your family respond when learning of your test results? And what if someone other than you and your doctor could access such highly personal information and use it against your better interests?
SCENARIO:
Jenny and Jeremy’s grandmother just passed away from Huntington’s Disease. Their father is not having any problems with his health at this time but since he is young he could have the HD gene and not show any symptoms of the disease. He doesn’t want to get tested. Jenny is engaged to be married and her fiancé is pressuring her to get tested. Jeremy has been tested but is not revealing results to his family.
1. What is the problem in the scenario above?
2. Give multiple approaches to solving the problem.
3. Take one approach listed above and write down several possible solutions to the problem using that approach.
4. Evaluate each solution thoroughly.