As the range of genetic testing options continues to expand, genetic counseling can be beneficial to people who desire to know more about genetic diseases and testing options.
Genetic research promises to yield powerful new tools for treating medical conditions. Yet doctors and researchers in this field still do not fully understand how genes cause and influence many diseases. Genetic counselors work with doctors and families to help families receive the information they need to understand a genetic disorder.1
Genetic counseling can be helpful for people who are concerned about a specific genetic disease. It normally involves a short term educational process for individuals and families at risk for a genetic disease, those who have a family history of a genetic disease, or those who are considering genetic testing.
Genetic counselors are trained health care professionals with degrees and experience in medical genetics, ethics, health-care delivery, research and counseling. They work as members of health care teams to provide important information to people considering genetic testing.2 They are trained to help families understand genetic disorders and provide information and support to those families. In more recent years, genetic counselors have become more specialized so it is important to find one that specializes in the type(s) of disease(s) that you are concerned about.
Using a genetic counselor
There are a variety of circumstances that may lead you to seek advice from a genetic counselor.
If you are at risk for having a baby with a disorder, genetic counseling can help you:
- Assess the risks of genetic disorders by researching your family history of genetic disease
- Weigh the medical and ethical issues of genetic testing
- Decide if you should undergo carrier testing before pregnancy
- Decide if you should become pregnant
- Decide if you should have prenatal testing
- Interpret the results of the testing
- Explain possible treatments or preventative measures for genetic diseases3
If you are considering testing, it is essential that pre-test counseling provide you with sufficient information on which to base an informed decision. Your decision to undergo genetic testing should be carefully considered. 4
If you’ve had testing that resulted in positive or questionable results for the disease, genetic counseling should address a number of essential areas, including:
- Long-term emotional and lifestyle issues
- Confidentiality concerns – including patient confidentiality laws that are governed by individual states
- Possible effects in the areas of health insurance, life insurance, and employment
- Practical, emotional, and personal impact on spouses as well as relatives who also may be at risk
- Future children and the risks they may face 5
Considerations when choosing a Genetic Counselor
If you are contemplating genetic counseling, there are several things you should consider:
- What is your purpose?
- If you are looking for godly advice, do they share your worldview? This is important if you want someone who can give you counsel that is spiritually consistent with your views. If you are merely seeking to understand more from a medical and scientific perspective, this would be less significant.
- Is your counselor’s view on sanctity of life similar to your own?
- Is he or she a proponent of using abortion to eliminate preborn children with a predisposition toward a genetic disease?
An appropriate relationship between you and your counselor is essential. As a Christian, you should choose a pro-life counselor who can give you good advice concerning the decisions involved with genetic counseling. For example, this is important because in the eyes of some, genetic technologies and testing such as Preimplantation Genetic Diagnosis 6 provide more than the means to identify disease, they can also be a tool to discriminate against undesirable embryos. Likewise, for preborn babies that are already implanted in the uterus and which are affected by a genetic disease, some doctors may offer a cure: abortion. It is important to choose your genetic counselor carefully so you are not pressured to take action which you believe is wrong (such as abortion). The purpose of a genetic counselor is to help you understand your options and choose the best course of action for you and your family – not to impose certain treatments contrary to your views.
Finding a genetic counselor
Doctors will sometimes refer people to genetic counselors. Universities and medical centers can also refer you to counselors or provide you with a counselor who is on staff at the institution. Sometimes, after seeing a genetic counselor, you may be referred to a geneticist who specializes in your disease.
Conducting your own research on the specific genetic disease and genetic testing before going to a counselor is always beneficial. This will give you an idea of the issues involved so that you can have a more knowledgeable and meaningful conversation with your counselor.
This article was originally published in August, 2004.
Dawn McBane is the bioethics analyst for CitizenLink, an affiliate of Focus on the Family.
1 Genetic Counselors, Genetic Science Learning Center, University of Utah, 2004 <http://gslc.genetics.utah.edu/units/disorders/counselors>
2 Learning About Genetics, National Human Genome Research Institute, Last updated Feb. 2004 <http://www.genome.gov/10001191>
4 Implications of Predictive Testing, Worldwide Education and Awareness for Movement Disorders,” Last updated May 12, 2004 <http://www.wemove.org/hd/hd_dia_gen_ipt.html>
6 For a more in-depth look at the ethical concerns involved with PGD, see the articles entitled:Preimplantation Genetic Diagnosis, and PGD: Pass or Fail?