2.1. Proponents’ Perspectives
Professional organisations worldwide support the predictive genetic testing of children to detect conditions that they may develop in the future (7). The American Society of Clinical Oncology (ASCO) has played a significant role in raising the awareness of healthcare providers, including oncologists, regarding the importance of detecting the risks of hereditary cancers in the field of oncology and in primary cancer prevention settings (8). Predictive genetic testing is recommended for a child with a positive hereditary family history of a specific genetic cancer, especially if early detection or therapeutic interventions may affect morbidity or mortality rates (3, 9).
The predictive genetic testing of children to detect heredity cancers helps in understanding the risk of getting a particular cancer, to make appropriate decisions about a person’s future health, and to decrease the risk of cancers by changing unhealthy habits and modifying life styles (2, 10). Predictive genetic testing has a pivotal role in the early detection and early treatment of cancer and will also alleviate anxiety and stress if the result of the test is negative (4-6). Genetic testing will help healthcare providers with regard to the prevention and early detection of cancers, treatment procedures, diagnosis and prognosis of the disease, the development of pharmacogenomics, and lifesaving decisions if a test result is positive (3).
Annually, around four million infants undergo newborn screening to identify various abnormalities in the United States of America (USA) alone, for which early detection and early treatments are promoted, which will help in preventing or minimising morbidity and mortality rates (11). Predictive genetic testing and its role in reducing morbidity and mortality faces many barriers that should be tackled (3). Parents should be educated about the process and the goals of these tests so that they are able to decide about the genetic testing of their children (3). Multiple factors regarding whether predictive genetic testing should be performed have to be considered in order to make the best decision for the child; the most important factor is the welfare of the child’s future (12). Parents, genetic counsellors, social workers, and healthcare providers should thus be involved in providing information to help decision-making about predictive genetic testing for a child (10, 12).
In the United Kingdom (UK), 47% of participants agreed on the rights of parents to decide upon the genetic testing of their children, regardless of whether there are therapeutic interventions or not, and 60% agreed that it was the parents’ choice whether to test their children, regardless of whether they were carriers of a genetic disease or not (7). It could be explained to parents that they may be able to do something based on the test’s results, such as changing lifestyles, being alerted to symptoms and interventions, and preparing themselves and their children to adapt to the situation. From both an ethical and legal viewpoint, parents should therefore be involved in deciding about the genetic testing of their children, because this test may have psychological and social impacts for all family members (4-6). Parents should seek more information regarding their children’s risks of developing inherited cancers and the need to detect any hereditary cancer early before it starts; this will improve the chance of preventing cancers and minimise the risks (13). Where there is debate between parents and healthcare providers about performing this test, especially when the parents are reluctant to test their children and ignore the advice of healthcare providers, those providers could argue in the court that the parents’ decision was abusive and negligent to their children’s health (3).
2.2. Opponents’ Perspectives
There are various problems surrounding the predictive genetic testing of children, and these should be considered before undergoing this test. One of these problems is the limited answers provided; a genetic test does not always give precise answers about inherited cancers, such as breast and colon cancers. This test is as susceptible to errors as any other test (i.e., false positives and false negatives), which may lead to physical and psychosocial harm, in addition to the loss of children’s privacy (2). Another problem is when parents react to the results by trying unverified treatments or preventive measures with significant adverse effects; for example, giving extra doses of vitamin A to children with developmental disabilities without respect to its serious adverse effects, such as liver toxicity (14, 15).
The most common explanation given by healthcare providers for not advocating genetic tests is that they wish to protect the child’s future autonomy (12). In the UK, the law recognises children’s future autonomy without looking to claim for the parents to find out a family history regarding genetic status, except if there are clear-cut benefits from the test for the child (16). Predictive genetic testing should be delayed until adulthood unless therapeutic interventions in the childhood period will reduce rates of morbidity or mortality (7, 13, 17). Twenty percent of participants disagreed with the statement that parents have the right to decide whether to perform genetic testing of their children (7). The most common explanation given for delaying the test until adulthood is a worry about the child being misinformed, because they are not involved in the decision-making from the beginning. Also, a fear that the child will suffer from discrimination, and parents are acting in ignorance of the child’s autonomy in the future.
Positive predictive genetic testing for serious inherited cancers may potentially cause psychological problems, such as anxiety, altered self-image, changed perceptions of the child, feelings of guilt, ineffective coping methods, stress in the family, depression, and social isolation (3-6, 18), although there is a dearth of studies that have explored the effect of genetic testing for untreatable illnesses on the psychology of children (19, 20). Furthermore, as a reaction to the results, children may adopt a new lifestyle, for example, refraining from eating certain types of food and/or avoidance of prolonged, unnecessary exposure to the sun to prevent or minimise the occurrence of cancer (21, 22). To further complicate matters, this test may also lead to serious physical harms as a result of making drastic decisions, such as prophylactic mastectomy, based on inaccurate test results (13).
LEAVE A COMMENT HERE: