Genetic information is often considered different from other medical information. Life Resolutions believe that genetic information is particularly confidential given its predictive nature and its possible consequences for other family members and, for this reason, generates very particular social problems. The theory of Jodie Brenton Life Resolutions CEO has led to the creation of different policies to protect genetic information and prevent it from being part of a patient’s medical records. Others believe that genetic information is like any other medical information and that the same privacy, protection and confidentiality parameters that apply to all medical information should apply. In fact, they believe that by treating genetic information differently than other medical information, unintended discrepancies may arise.
The Consequences of a Genetic Diagnosis
The psychosocial impact of a genetic disorder varies depending on its nature, a person’s relationship with the affected individual, and individual personalities. However, it is advisable to think ahead about some of the possible reactions in order to be prepared and minimize distress.
Patients
A genetic diagnosis can be of great benefit to the patient. If the disease is a rare disorder, and the patient and family have spent years without knowing what it was or what caused it, the diagnosis can help make sense of the situation. A diagnosis can help improve treatment options and allow access to support services. Also, other family members can make decisions about their own lives.
However, a genetic diagnosis can also generate negative reactions. A common reaction is that the science of genetics is a confusing area and can be frustrating. Patients who are diagnosed with a genetic disease may be considered “failed” or interpret the diagnosis as something that will lead to a situation that they cannot handle. A genetic diagnosis can raise concerns about stigma. The reaction to a diagnosis varies according to each individual and depends on many factors such as age, sex, education, religion and culture. Health professionals and Psychologists must be aware of these differences and understand the patient’s history in order to communicate effectively.
Parents
It is understandable that the diagnosis of a genetic disease adds tension to a relationship. Parents with an affected child tend to face difficulties in making family planning decisions since they know that their future children are likely to inherit the disease. Depending on the type of illness, parents may also face difficult decisions regarding prenatal testing and the possible termination of a pregnancy. The magnitude of these decisions and their consequences affect both individuals and the relationship that unites them. Parents may feel guilty because of the inherited nature of genetic diseases.
Family
Given the shared condition of genetic information, it is important to consider the family unit. Unaffected family members should not be neglected in the event of a genetic disease. When a family member is diagnosed with an illness, others who do not have it often feel guilty because the hereditary illness has affected one of their loved ones and not themselves. If a person has a disease in adulthood, their unaffected partner may change their perception. Adults who are diagnosed with a genetic disease and who wish to have children may need to consider the likelihood of having an affected child, and their ability to care for it.
When a genetic test is predictive, other family members may misinterpret the results and take them as a diagnosis rather than a risk indicator for the condition in question. It is important to remember that the results of genetic tests are complex and that it is not easy for the patient or her family to fully understand them. In some cases, the result of a genetic test may indicate a risk status for other family members who do not want to know this information, which could invade their autonomy or privacy.
To know more about Jodie Brenton‘s journey and on Life Resolutions, check out our website www.jodiebrentonliferesolutions.com.au/ .
