In a wide variety of cases, when patients receive the results of genetic tests, they are involved in information that also directly affects their biological relatives. This familial quality of genetic information presents doctors with ethical problems, particularly in connection with their duty of confidentiality. Genetic testing is generally not only inaccurate when used for public safety purposes but also unnecessary. A more effective approach to protecting public safety would be to routinely verify the actual functioning of a worker in a safety-related profession. 115.Genetic testing poses many ethical challenges at the individual, organizational
and macroeconomic levels of healthcare systems.
In particular, carrying out genetic tests for rare diseases requires a comprehensive understanding of the complexity and diversity of the associated ethical aspects. This systematic review provides a detailed overview of ethical aspects relevant to genetic testing for rare diseases, as discussed in specialist literature. The Pubmed, Science Direct and Web of Science electronic databases were searched, resulting in 55 relevant publications. From the latter, a total of 93 different ethical aspects were
identified.
These ethical aspects were divided into three main categories (testing procedures, consequences of test results, and contextual challenges) and 20 sub-categories, which highlight the diversity and complexity of ethical aspects relevant to genetic testing for rare diseases. This review can serve as a starting point for further in-depth investigation of specific ethical issues, training health professionals on this topic, and as a basis for international policy development in the area of genetic testing for rare diseases. People interviewed about genetic testing fear that insurers will raise tariffs or refuse to insure them. They express concerns that employers won’t hire them
.
There is a general fear that friends and family will treat them differently or abandon them if they are clouded by a deadly gene. Medicine obliges not to cause harm, requires that genetic information be used in ways that help people, not in ways that stigmatize and marginalize them. There are some ethical dilemmas that people are concerned about. Being able to actually obtain the information contained in the structure of DNA could result in people being discriminated against because of work or insurance coverage
.
Another controversial issue is the prospect of fetal selection during pregnancy. This causes a lot of excitement among pro lifers. The idea of creating the perfect child is also unsettling. The other side of the coin is that we would make advances in medicine that are currently unparalleled, such as curing hereditary
diseases.
Government measures relating to genetic diseases are likely to be assessed very differently, particularly with regard to disorders for which there is no effective treatment and therefore the only medical procedure available is abortion of an affected fetus. It is interesting to note that mandatory AIDS screening has not been introduced for many of the same reasons that apply to mandatory genetic screening. In the era of the Human Genome Project, where additional tests are being developed, some people are in favour of newborn screening, partly for reasons of less immediate and less obvious benefits. People must also be informed of potential losses of insurance or employability, or social consequences that may result from knowledge of the disorder for which testing
is being discussed.
The committee recommends that research be carried out to find out what patients want to know in order to make a decision about whether or not to undergo genetic testing. It is the right and responsibility of individuals to determine who has access to medical information, particularly the results of genetic testing. An unavoidable part of genetic counseling is obtaining informed consent for the testing process and disclosing the results. As part of this discussion, it is proposed that the term screening means measurements that precede or coincide with a potential exposure and which document a person’s inherent genetic makeup
.
The Committee recommends breaching confidentiality and informing relatives of genetic risks only when attempts to obtain voluntary disclosure are high likely to cause irreversible or fatal harm to the loved one, disclosure of the information prevents harm, disclosure of the information is limited to information necessary to diagnose or treat the loved one, and there is no other reasonable way to prevent the damage. One example is the “Council of Europe Convention on Human Rights and Biomedicine,” which also covers genetic testing. One aspect that has been discussed most controversial in the literature published in the last ten years and which, in contrast to more common diseases, is of particular importance for rare diseases, is the availability and accessibility of genetic testing. An inadequate quality assessment could conceal valuable information, as the purpose of this review is to address the full range of ethical aspects
to cover.
A crucial question is whether genetic disorders or predispositions provide a basis for blocking access to certain social goods, such as employment or health insurance. Laws have been introduced to extend the definition of disability to include a genetic or medically established potential or a predisposition to a physical or mental impairment that significantly limits a major life activity. The Committee identified the area of multiplex testing as an area where more research is needed to develop opportunities that ensure recognition
of patient autonomy
.
References:
- AMA Code of Medical Ethics’ Opinions on Genetic Testing | Journal of Ethics | American Medical Association
- Social, Legal, and Ethical Implications of Genetic Testing – Assessing Genetic Risks – NCBI Bookshelf