"Accurate descriptions of sex chromosome differences are critical, the decisions potentially regrettable, and the long-term outcomes devastating if a termination is based on the misinformation," that the patient later discovers to be misinformation for instance, "that any of these conditions is comparable to Down's Syndrome" (Biesecker r 2001:2) Conversely, it is also important not to minimize the odds of a potentially fatal genetic condition like Tay Sachs disease.
Providers are obliged to obtain useful up-to-date information and to ensure parents have adequate opportunity to consider their decision with the help of an experienced healthcare provider, preferably in medical genetics, and if necessary, a counselor who is attuned to the cultural assumptions and needs of the couple's population group, and religious beliefs. Certain populations might have a different view and understanding of the real difficulty of raising a child suffering from a heritable disorder, or even the concept of heritability of common disorders.
Attitudes toward abortion, desires for biological children, religious beliefs, attitudes toward disability and human variation, and social norms about prenatal testing outcomes are likely influences upon the couple's decision, and all of these attitudes should be discussed in a culturally sensitive manner, as must practical issues such as money and social support. Thus, healthcare providers have an obligation to explore the meaning the information has for women and their partners to help decision-making within a culturally meaningful context and practical context.
Having access to knowledge or speaking with individuals from the couple's population group, especially if different from the counselor's own can be valuable, to gain a better understanding of the belief systems and support systems open to the couple in dealing with a child with serious medical complications or the aftermath of an abortion. Of course, not all women experience depression after abortion. However, "grief reactions that accompany therapeutic abortion for medical or genetic reasons are similar to grief reactions that accompany a spontaneous abortion" or miscarriages, regardless of when the therapeutic abortions are performed (Rosenfeld 1992:1). "The woman and her partner experience the same stages of grieving as families whose child died unexpectedly. The grieving process may be complicated by family and friends who may have been unaware of the pregnancy, who may be ambivalent or who may not recognize the grieving process" as legitimate, or simply because the couple lacks social support to articulate grief (Rosenfeld 1992:1). Understanding how grief, loss, and the unborn are viewed by the couple's community and faith structure is part of the counseling...
Genetic Disease Diagnosis The Trosacks Initial visit: three to five appropriate members for an interdisciplinary team When the Trosacks come for their initial consultation, they must first seek to gain insight into the nature of Tay-Sachs disease, particularly because they are unfamiliar with the illness and do not know any family members who have coped with the disease. This revelation is new and entirely unexpected. A certified genetic counselor with a specific understanding
Genetic counseling involves the sharing vital information and knowledge by experienced and well trained experts in the field of genetics for individuals with high risks of suffering some genetic disorders or transferring it to their children. It is the responsibility of a genetic counselor to provide relevant information concerning the hereditary nature of certain diseases and their risks of reoccurrence; addresses the concerns of patients, their health care providers and
Huntington's disease (HD) was the first autonomic dominant disorder for which genetic prediction became possible" (Harper, et al., 2000, Journal of Medical Genetics, p. 567). HD is a disease that occurs due to an inherited disorder leading to the death of brain cells. A diagnosis of HD is accomplished through genetic testing which can be implemented at any age regardless of whether the symptoms manifest or not. Although, the specific
Individual Impacts Genetic Diagnosis Individual Impacts of Genetic Diagnosis The number of inherited disorders and risk factors that can be detected through genetic testing is increasing rapidly, and genetic testing may soon become a common component of routine medical care. Is behavioural medicine ready? For the first time, a sophisticated understanding of gene-environment interactions as manifested in the interactions among an individual's genetic predispositions, behaviour, and environment seems within reach. Rather than
The more experience a facilitator has with a minority group, the greater the likelihood the facilitator will be able to help those members feel included, rather than excluded from the group process. This is critical, because inclusion is an important social phenomenon. "Communities who are strong and inclusive lead to better quality of life, stronger sense of identity and belonging, sharing mutual respect and equality. It is further recognised
Their heritage is important because certain ethnic groups are more likely to be carriers of Tay-Sachs. "The incidence of Tay-Sachs is particularly high among people of Eastern European and Ashkenazi Jewish descent. Patients and carriers of Tay-Sachs disease can be identified by a simple blood test that measures beta-hexosaminidase a activity." (NINDS, 2011). Because the Trosacks have a fetus with Tay-Sachs, it is not necessary to test their blood
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