Legal Issues of Genetic Engineering
Genetic information poses serious challenges to the traditional operation of insurance. Health insurance in this country is based on the idea that risks can be predicted at the population level, but not well on an individual basis; In this way, insurance becomes a risk-spreading mechanism. If insurers can learn about actual future risks to people`s health (e.g., risk of serious, late-onset illness) through genetic testing or the use of genetic information obtained through other means, the benefits of risk diversification are lost; The person is changed by an amount equal to future medical expenses, which can make insurance prohibitive in some cases. Performing multiple genetic tests on a single sample of genetic material – often using automation techniques – has been called multiplexing testing. The Committee recommends obtaining informed consent prior to such multiplex testing. New means (such as interactive or other types of computer programs, videotapes and brochures) should be developed to provide people with the information described in the previous recommendations, such as descriptions of the type of tests included in the multiplexing tests and the type of interference being tested (see Chapter 4). A health care provider or counselor should also provide information about each of the tests, or if this is not possible due to the number of group tests, the provider or counselor should provide information about the categories of disorders so that the person is able to make an informed decision about whether to undergo the test. To the extent that the applicable legislation does not provide for such confidentiality, it should be amended so that disclosure of genetic information is not required. Since genetic disorders are not transmissible to the spouse, it could be argued that there is no legitimate reason to disclose them. However, the spouse may have a great interest in genetic information because he wants to protect potential children from risk. Take the case of a doctor who learns that a young man will later develop HD. The woman seems to have at least some claim to this information, because if she and her husband have children, there is a 50% chance that each child will inherit the disease.
Similarly, each spouse appears to be entitled to information that the other carries only one gene for a recessive defect. Because of the importance of reproductive choices, this information is crucial for the spouse. Another case where information on genetic risks emerges in the marital context is prenatal screening. In a fetus, an autosomal recessive disorder can be detected, which occurs only when both parents transfer the respective gene. If during prenatal diagnosis it is established that the mother is a carrier of the gene, but her husband is not, the doctor knows that the husband is almost certainly not the father of the child. It could be argued that the health care professional has a duty, or at least the right, to inform the husband of his wrongly attributed paternity so that he knows that the future children he has are not at risk for that particular disorder. Others argue that proposals for self-regulation are based on an outdated understanding of scientific practice, according to which the development of new technologies takes place in a political and legal vacuum.188 The danger is that ruthless scientists like He Jiankui interpret such an approach to science as an encouragement to push the boundaries of what is legally and ethically accepted. Commercially, they have a reason to insist on this idea. For its biotech startups, for example, it has raised about $40 million from investors. In the summer of 2017, the first successful CRISPR modification of embryonic nuclear DNA took place. Kazakh-American biologist Shoukhrat Mitalipov and his American-Chinese-South Korean team have successfully repaired a genetic mutation associated with severe heart disease.28 However, the resulting “CRISPR embryos” were not implanted for pregnancy.
With the birth of the Chinese “CRISPR babies” in November 2018, this last step seems to have been taken. It seems that Alta Charo is not alone in his argument. Similarly, recent calls for a regulatory pathway to HGGE make little or no mention of human beings, human dignity, or the human species. In order to better understand the normative change taking place in this context, I first describe the vision of human rights and human dignity as implicit in the existing Human Rights Act on the treatment of the germline. Secondly, I contrast it with the vision of human rights as it has developed in recent proposals to replace prohibitions on genetic modification of offspring with regulatory systems. Accordingly, human dignity is explained in this approach as a legal principle that protects not only individual rights and freedoms (referred to in the academic literature as “the individual dimension of human dignity” or “dignity as empowerment”), but also the collective interests of humanity on which human rights are based (“collective dimension of human dignity” or “dignity as coercion”).141 Concerns about both dimensions of human dignity are evident in the Council. the European and UNESCO approach to human germline treatment. The introduction of “optical memory cards,” a credit card-sized device that stores medical information.35 These cards have already been introduced for use in health clinics in the city of Houston. There is enough computer memory on the cards to include genetic information about the person and, in the future, about a person`s entire genome. However, according to an EEOC interpretation, the law does not protect carriers of genetic diseases who are themselves healthy, but who could be denied employment because they have a 25% risk of giving birth to a child with a genetic disease. In addition, the EEOC does not consider a person who is at increased risk of disease due to genetic factors or who possesses the gene for a late disorder such as Huntington`s disease to be disabled and therefore protected by law.
During the parliamentary debates on HNGT, the UK Department of Health used different reasoning to reach the same conclusion. It argued that trials for HNGT are not in fact clinical trials within the meaning of the EU Clinical Trials Regulation and therefore the prohibition does not apply to this situation. The Ministry argued, in essence, that, although Article 90 of that regulation postulates that `no clinical trial of gene therapy may be carried out resulting in changes in the genetic identity of the subject`s germline`, that regulation is not intended to imply anything for trials in the field of germline interventions. The Department cites two reasons for this position. It could be argued that health professionals working in the field of medical genetics have disclosure requirements similar to those of a physician whose patient has an infectious disease or a psychotherapist with a potentially violent patient. Because of the heritability of genetic diseases, a medical professional who obtains insight into a person`s genetic status through research, counseling, examination, testing, or treatment often has information that is valuable not only to the patient, but also to their spouse or relatives, as well as to insurers. employers and others. However, a counter-argument could be made that since the health professional does not have a professional relationship with the parent and the patient does not harm the loved one (unlike violence or infectious diseases), there should be no duty to warn. Given the birth of genetically modified babies in China, these last words have taken on a new urgency.