Emotional Aspects of Genetic Counselling and Testing
It is never as simple as just getting the test.
This statement has surprised many people who have contacted me requesting genetic testing; those who just want the test and to be done with it; those who don’t need to bother with this “counselling stuff”.
As someone who is passionate about this “counselling stuff”, I have put together a very brief list of some of the ways genetic testing can impact a person emotionally.
Anxiety and Uncertainty
The prospect of uncovering one’s genetic information can be daunting. Clients often experience anxiety, not only about the potential results but also about the implications for their health and their family’s future. The uncertainty of what might be found—or not found—can be a significant source of stress. In addition, there is a lot about genetics that is not certain. We might identify a genetic issue for someone but not have a clear picture of how that issue is likely to affect their health and wellbeing into the future. Genetic counselling often involves balancing the anxiety linked with getting a bad result and the impact of living with uncertainty if deciding not to be tested.
Guilt and Responsibility
Learning about one’s carrier status or genetic predisposition can lead to feelings of guilt, especially if there’s a possibility of passing on a genetic condition to offspring. Clients may grapple with a sense of responsibility for their family’s genetic legacy, which can be emotionally taxing. Mixed within this can also be a sense of blame towards the parent who passed on the genetic condition in the first place, or the phenomenon of survivor guilt which is a sense of guilt for not having the genetic condition that has affected others in the family. Guilt, responsibility and blame can create a lot of tension between members of a family that can be a challenge to navigate.
Grief and Loss
For some, genetic counselling and testing can trigger a sense of loss or grief, particularly if they’ve lost relatives to genetic conditions. The process can reopen old wounds and bring up feelings of sadness and mourning. Anticipatory grief can be a complex emotional experience for some clients faced with inheriting a condition that will affect them later on in life – this is the feeling of grief that is linked with a loss that hasn’t yet happened but will one day (such as with an adult-onset neurological condition like Huntington’s Disease). Another complex experience is the loss of something that never was, such as the loss of a future with a healthy child, or loss of the expectation that someone will live a long life.
Isolation and Loneliness
Dealing with genetic risks can sometimes feel isolating. Clients may feel that others can’t understand their situation, leading to loneliness and a sense of being disconnected from friends and family. In some instances, people may not wish to discuss the details of a genetic condition or genetic result with friends as it potentially involves sharing personal information not only about oneself, but also about one’s family. In some cases, people may decide to withhold their genetic result from family as a way of protecting family from the burden of stress or guilt, or because a genetic result might add further complexity to strained family relationships.
Decision-Making Pressure
The results of genetic testing can necessitate difficult decisions regarding health management, family planning, and lifestyle changes. The pressure to make the “right” choice can be overwhelming, especially when considering the well-being of future generations.
Impact on Self-Identity
Genetic information can influence how clients see themselves and their place in the family or society. It can challenge their sense of identity and raise existential questions about fate and control over one’s life.
Coping with Results
Whether the results are positive, negative, or inconclusive (no mutations identified), clients must find ways to cope with the information. Positive results can lead to relief but also new concerns about surveillance and treatment. Negative results can bring temporary relief but also questions about what else might be lurking genetically, or guilt that others in the family may be affected. Inconclusive results can lead to frustration, a lack of closure and increased uncertainty.
Conclusion
The emotional landscape of genetic testing is complex and deeply personal and for some people it can be very surprising (ie. those who want to skip this “counselling stuff”)!
Genetic counsellors are trained to navigate these emotional waters, offering a compassionate ear and professional guidance. Not only do we understand the science side of genetic testing, but we also understand the emotional side and can help prepare clients and support decision making and adjustment to a genetic result. The genetic counselling step of genetic testing has huge value, so don’t skip it.
Genetic counsellors can also identify when additional support is needed, and can refer clients to support groups or mental health professionals.
Learn more:
If you would like to read more about this topic, you may find this resources helpful:
National Society of Genetic Counsellors.
Looking for more information?
Here are some websites that may be useful.
Human Genetics Society of Australasia Home (hgsa.org.au)
Genetic Health Service NZ Home | Genetic Health Service NZ
Centre for Genetics Education Welcome — Centre for Genetics Education – Welcome – Centre for Genetics Education