The first ethical consideration addressed is confidentiality. The access to institutional third parties or outside the family to genetic data should be regulated, especially to avoid discrimination (National Human Genome Research Institute, 2020). The question of how to manage and protect the data recorded in computer banks, which are so susceptible to disclosure, must be addressed (e.g., genetic data should be stored separately, without connection to other personal electronic records). In the field of family relations of the patient, the subject is not easy (nor surely desirable) to regulate. There may be conflicts with family members if the client refuses to reveal information that may be essential for those to take their corresponding options. In these cases, if the patient refuses, could the doctor, to avoid damage to third parties, reveal relevant data? For many, there is an obvious duty to inform third parties when not revealing such data can lead to severe damage.
The second issue pertains to the disclosure of sensitive data to the relatives of the client. In certain cases, there is a dilemma of whether or not to give information to the client that may be psychologically sensitive or that may disturb their family relationships (revelation of genetic sexual identity, non-fatherhood of the legal father, etc.) (National Human Genome Research Institute, 2020). These issues deserve a case-by-case treatment and with extraordinary delicacy. Besides, the classic deontological principle of primum non nocere (non-maleficence) justifies not revealing information that can be devastating to the individual. In the context of genomic information, whose mere knowledge is not always going to translate into an improvement of the individual, the right to not know is insistently claimed.
Additional Ethical Issues
The ethical-legal challenges related to research in genomics transcend the problems of bioethics in clinical genetics and research in human beings. The most common current application of genetics remains genetic counseling to individuals and couples at risk of suffering or transmitting a genetic disease to the offspring (Parker & Kwiatkowski, 2016). The practice of genetic counseling has been enhanced by advances in the knowledge of the human genome, given that the number of genes associated with diseases that can be analyzed molecularly grows very rapidly, adding today more than 700.
The ethical principles of genetic counseling include: a) respect for the dignity and basic intelligence of people, and their medical and reproductive decisions, particularly those related to initiating, continue or terminate a pregnancy when there is a genetic risk or when a prenatal diagnosis checks a genetic problem in the fetus; b) provide information as objectively as possible, avoiding the influence of the personal values of the professional on the user (non-directive advice); c) protection of the privacy of genetic information against unjustified external intrusions (insurance companies, employers, etc.; d) contribute to the demystification of the public in genetics, through education; e) provide information as objectively as possible, avoiding the influence of the personal values of the professional on the user (non-directive advice); f) protection of the privacy of genetic information against unjustified external intrusions (insurance companies, employers, etc.; g) and contribute to the demystification of the public in genetics, through education (Burke et al., 2019).
Ethical Issues in the Informed Section
Currently, in most countries, there are no specialization programs in genomics, a situation that should change rapidly in the face of the avalanche of genetic data that genomics will generate. It is crucial to create an environment that allows patients to make autonomous but informed decisions with emotional support. It is also important to continue learning to combine the two deontological principles of beneficence and autonomy in the context of a high density of genomic information.
The development of the counselor-client relationship should be a priority in informed consent. In western countries there is an almost universal agreement that genomic advice should always be non-directive, avoiding the interference of the ideas and beliefs of the professional in the decision of the clients, and at all times respecting their autonomy (although they can be told examples of various types of options taken by others in similar circumstances) (Niemiec & Howard, 2016). The objective is that the client, in view of the information, freely makes an informed decision that will affect important aspects of their reproductive options, social and work life, etc. This does not mean that the counselor should not (especially in view of certain potentially dysgenetic decisions) establish a relationship with his clients in which the reasons and consequences of certain decisions are discussed.
On the other hand, there are good reasons that allow the principle of patient autonomy to be combined with that of beneficence, for which the counselor may try to have the consultants reevaluate or reconsider their decision. An essential issue is that genetic counseling should always be provided in clinical settings and guarantee autonomous and informed decisions and psychological support, far from commercial pressures (Burke et al., 2019). Lastly, it is essential to know that there is also a prior right: that of not knowing. An individual cannot be forced to know data about predispositions to future diseases that have no cure, because we would create a situation of impotence that could negatively influence their way of life.
Impact of Genomics and Personalized Medicine on Health Care
Genomics is intended to predict the susceptibility of individuals to develop a disease, implement preventive strategies, find specific therapeutic targets, and individualize treatments according to the genetic characteristics of people (Boyce & Garibaldi, 2019). The identification of the genomic variants present in each individual will allow to elaborate genomic profiles (genetic tests) and to predict the response of each patient to the medications, their predisposition to different diseases, and to establish their prognosis before the appearance of chronic complications.
Genomics is one of the most important tools for preventive medicine and a tool that will minimize the prevalence of chronic diseases. The impact will be visible in the programs of prenatal screening - or preconception - of chronic diseases, as well as monogenic diseases. Genomics is also useful in pharmacogenomics and nutrigenomics (Burke et al. 2017). Pharmacogenomics is the first step towards a successful personalized medicine, and it is already used in anticoagulation therapy in patients with heart disease or post-operated valvulopathies.
Genomic knowledge is already being transformed into better diagnostic methods based on direct DNA analysis, applicable to confirm a clinical suspicion of genetic disease and for prenatal diagnosis in cases of high reproductive genetic risk. Genetic testing can also be applied to asymptomatic children and adults, who may have inherited from a parent a causal mutation of a genetic disease, and who could develop the disease in question in the future (Bankoff & Garibaldi, 2019). It is also possible that mutations are detected that give a genetic predisposition to develop, in interaction with environmental factors, any of the numerous diseases of complex etiology, such as breast cancer, Alzheimer's disease, or coronary arteriosclerosis.
The Complexity of the Technical Issues Related to Managing Genomic Data
First, there is the social concern about the use and abuse of genetic data (Bankoff & Perry, 2016). The history of eugenic ideas (especially in the first half of the twentieth century) casts a shadow of doubt on whether genetic information will serve to discriminate against individuals or populations and to violate fundamental rights, especially in a society that permeates ideas about the genetic determinism of human qualities (something unsustainable scientifically, but that too often tends to be susceptible to political instrumentalization intended to justify possible discrimination and injustice).
Secondly, the dissemination of personal genetic data to third parties or entities (companies, insurance companies, etc.) could be a serious attack on privacy and endanger the expectations of the affected person, conditioning delicate decisions in various fields (family, education, health, work, and insurance, etc.). One would imagine a society in which the authorities have archived tissue and fluid samples from the entire community, and a bank of DNA profile data of each person (Badalato, Kalokairinou, & Borry, 2017). Not only law enforcement officers, but also insurance companies, employers, schools, adoption agencies, and many other organizations, could have access to those files according to their " need to know data "or proving that such access is made" in the public interest. A person could end up being denied jobs, insurance, adoption, health care, and other social services and benefits based on the information contained in their DNA profile, such as a genetic disease, genetic inheritance, or someone's subjective idea of what is a "genetic" defect.
It would be necessary to distinguish, however, between the dissemination of information in the family environment and the dissemination of that same information to corporate entities. In the first case, there are situations in which the right of family members to know genetic data of an individual affected by a genetic disease could prevail to avoid dangers and take responsible measures. Either way, this family environment is less likely to be regulated by laws. Specific legislation should be legislated to avoid the use of sensitive genetic data by companies and government agencies, especially in view of the danger of dissemination by electronic methods (Shabani, Knoppers, & Borry, 2015). The acquisition of genetic data outside the family context can lead to stigmatization and discrimination of individuals for biological reasons. A key issue here focuses on the balance between the individual right to genomic data and the right of society to prevent damage to third parties. It is crucial to distinguish genetic information that should be confidential at all costs from that which should be disclosed to avoid threats to the health or integrity of third parties and the general population.
Considerations for the Shifts in Health Care Delivery caused by Personalized Medicine
Due to the abundance of genetic tests as genomic medicine progresses and personalized medicine, and the foreseeable lack of specialized clinical genetic counselors, some of the services will have to be integrated into the level of primary care, which indicates the need to train general practitioners and nurses properly (Takashima et al., 2018). They will have to play an essential role in educating the population, so they must be aware of the advances in the field, and be prepared for psychological and social ramifications.
The way humans have to face diseases, old age, and death are subject to a series of social and cultural influences, which change over time. Although improvements in health and life expectancy have largely depended on improvements in preventive and social measures (more hygiene, changes in diet, urbanization with independent drinking water and wastewater networks, etc.), people tend to give more importance to the idea that each disease has a specific cause and that it can be remedied from specific medications, according to the genomic medicine paradigm.
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