Genetic engineering stands on the crossroads of science, ethics, and public services such as healthcare. On the one hand, it promises undeniable benefits to the society, but on the other hand, it arouses multiple questions and concerns. Healthcare proves to be the focal point of both ethical concerns and scientific advancements that account for potential benefits and limits of genetic engineering in curing diseases and eliminating genetic flaws.
In essence, genetic engineering is the set of techniques and technologies that enable alteration and recombination of cells’ genetic composition as a means of improvement of existing qualities of an organism, adding new qualities or eliminating flawed DNA sequences that account for undesired qualities. Since the early 1980s when genetic engineering was per se in its embryo state, the world already recognized its potential, as well as potential pitfalls. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982) issued their publically available report, in which they stated:
Genetic engineering techniques are not only a powerful new tool for manipulating nature – including means of curing human illness – but also a challenge to some deeply held feelings about the meaning of being human and of family lineage. But as a product of human investigation and ingenuity, the new knowledge is a celebration of human creativity, and the new powers are a reminder of human obligations to act responsibly. (p. 2)
The afore cited statement indicates that even in the dawn of genetic engineering the world community envisioned and admitted the duality of such a powerful tool as genetic manipulation. The science had evolved through decades, but concerns and ethical debates evolved adjacently. The involvement of public control of science became pivotal in the process of genetic engineering evolution, which led to the emergence of bioethics – a field aimed at balancing science and ethics. Bioethics became the filter of all genetic engineering discoveries. From the beginning, the global community perceived each genetic engineering step as both a breakthrough and an ethical challenge (Evans, 2002). Genetic engineering of crops became both the means of combating hunger and the source of shocking truth about the GMOs as trans-species mutants. When genetic engineering advanced and introduced Dolly to the world, the event turned into the great divide in which the proponents treated scientists as Gods, while opponents accused them of “playing God”. Nowadays, the world stands on the threshold of a new revolution as genetic engineering becomes focused on a new subject, i.e. humans.
Human genetic engineering (HGE) raises as many questions and concerns as no other field. Apart from general hopes laid on the HGE regarding treatment of diseases and fixing genetic anomalies, there exist speculations about the possibility of future in which human cloning will result in a chance of raising one’s younger self. More pragmatic concerns regard safety and long-term effects of gene technologies in distant progeny, inheritable genetic modifications, or a well-known stem cell moral dilemma. Below is an excerpt from the fact sheet of the Council for Responsible Genetics (CRG) that summarizes reasonable doubts and fears that people have concerning the HGE. “For some, the term brings to mind hopes of futuristic therapy and fantastic human enhancement; for others, it generates fears of a dystopian world where eugenics is commonplace and the human genome is corrupted” (Council for Responsible Genetics, n.d.). In fact, the science of genetic engineering will never be clear from ethical and legal ambiguities since there is no vivid borderline between such notions as, inter alia, therapy and enhancement. Potentially, genome modification provides endless possibilities for changing genetic traits. Thus, the difference between a therapeutic interference of fixing harelip and an enhancing correction of droopy ears will not be obvious (Sandel, 2007). Similarly, it is unclear whether a parents’ desire to have a child with certain traits, such as high intelligence, height, or eye color, is a matter of enhancement or a justifiable desire for a child to bear the best of the family’s genetic makeup (Council for Responsible Genetics, n.d.). Some label the aforementioned manipulations as creating “designer babies” (Simmons, 2008). As said in Sandel (2007), “The distinction between curing and improving seems to make a moral difference, but it is not obvious what the difference consists in” (p. 12). Consensus on such issues has not been reached yet; nonetheless, genetic engineering theory is gradually entering its practical stage.
Among spheres of social functioning that will witness the most dramatic effects of the HGE is healthcare. New, high standards and aims set by genetic engineering already trigger associated changes in the domain of healthcare. The HGE has reshaped both understanding of disease mechanisms and medical profession as a whole. After having being studied in the microscope, more and more diseases are now viewed and treated through the lens of DNA manipulations. The list of spheres of practical application include elimination of mitochondrial disease via mitochondrial DNA transfer, cell-based therapy in embryonic and somatic stem cells, somatic cell nuclear transfer using adult skin cells, curing deafness and cancer on the level of DNA sequences, etc. Thus, a considerable amount of information yet known pertaining to human genome allows scientists not only to study it passively, but to change it actively. Genomics is the field that studies the genetic basis of diseases, such as cancer, mental illness, heart disease, deafness, etc. “A natural progression has been to integrate discoveries in genomics into the health care arena” (Norrgard, 2008). The end product of such a fusion is called genomic health care. Its first achievements and pitfalls are already seen. Inter alia, new highly effective diagnostic tools have been invented. Among them, one may single out spectral karyotyle that helps health care professionals diagnose genetic disorders. In general, genomic health care has already shown the necessity and potential to transform medicine and further individualize standards of healthcare with respect to patients’ individual genetic makeup. The latter innovation pertains to both treatment and care therapies (Norrgard, 2008).
With new tools and approaches, there comes a necessity to educate and constantly update healthcare providers about ongoing genomic and genetic research and its results, as well as develop new protocols of healthcare. Respectively, duties and responsibilities of caregivers are changing. Under the pressure of HGE-induced approaches to healthcare, new careers have emerged such as research scientists, clinical geneticists, clinical laboratory geneticists, genetic counselors, and genetic nurses. Research scientists carry out a primary genetic research. Duties of clinical geneticists consist in making diagnoses based on clinical examination of patients and their test results, including genetic testing. Genetic counselors educate and guide individuals and their families through the process of understanding and accepting diagnosis, treatment, risks, and outcomes. Genetic nurses have a wide spectrum of duties: aiding patients in lifestyle changes, managing conditions of chronic illnesses, developing strategies to address health disparities, enhancing the end-of-life experience for individuals and their families, etc. Administration of new jobs will require official empowered bodies such as the American Board of Medical Genetics to certify and monitor specialists verifying their qualification (Norrgard, 2008). It is the new face of healthcare in which primary and specialty care will share the burden of genetic information and services and technical novelties will be focused primarily on human gene therapy (Murray, Rothstein, & Murray, 1996).
Recently, a group of researchers and scientists headed by Stephan Heller pursued an ambiguous goal of treating inner ear hearing deficiency. Specifically, they targeted the loss caused by genetic flaws in the DNA and attempted to cure it via gene therapy, namely introduction of stem cells into hair cells. Scientists extracted embryonic cells and exposed them to chemical stimuli that accounted for a normal development of hair cells to be later implanted into a living chicken embryo. Although the experiment has been performed on chickens, its potential for the humankind is immense and the outcome is promising. Heller’s breakthrough study illustrates the first of two basic options of treatment interference. The first one is implantation of laboratory-grown stems with correct DNA into the human recipient. The second option consists in correcting the DNA with the help of gene therapy. Both approaches foresee the potential for engineering patient’s individual material, the original lack of which causes a certain disability such as deafness. Evidently, treatment of hearing loss at any stage from pre-birth to adult, in vitro or otherwise, is a highly beneficiary and ethically justified healthcare phenomenon (Morris, 2012). Practical value may be exemplified by people suffering from hearing loss who would be able to hear again or hear for the first time in their lives or cases of deaf parents who had reasonable fears of having a deaf child and made an informed choice against giving birth. However, there is the flip side of the coin.
A few years ago, a story shook tabloids, scientific publications, internet forums, and world societies in general. A deaf lesbian couple decided to have a child with hearing disability. Though, in their case deafness was not perceived as a disability. On the contrary, future parents considered it as a privilege, a marker of the cultural identity. Guided by such a worldview, they did the opposite to what deaf couples usually did. Instead of ensuring birth of a child that would be healthy in a conventional sense, they intentionally and consciously found a donor with five generations of inherited deafness. As intended and wanted, a child was born deaf. The event resonated through the general public, causing social indignation. Many people labeled the decision a crime of imposing a disability on a child. The parents parried such outbursts of condemnation by saying that they simply wanted to have a child like themselves to share unique benefits of the silent community and silent world. Although this case does not provide examples of genetic manipulations via medical intrusion, it still arouses many moral questions regarding potential non-standard or unethical application of genetic engineering. It is possible that in the future one couple will use genetic engineering of Heller’s design to cure deafness in their child, while the other couple somewhere else would use gene alteration not to avoid, but to assure deafness. Apart from obvious black-and-white cases when genetic engineering cures, such marginal gray cases make the global community come back to the issue of what is ethical and justifiable and what is not. In regard to the aforementioned case, Sandel (2007) raises two core-deep questions: “Is it wrong to make a child deaf by design? If so, what makes it wrong – the deafness or the design?” (p. 2). Answers to these thought-provocative questions are not yet ripe in the global consciousness.
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A reasonable recommendation would be to limit application of the HGE to a narrow list of permissible, justifiable, and legally transparent options in order to avoid its controversial and potentially unethical use. However, in practice, such a recommendation will probably appear vain since it is impossible either to embrace all potential misdoings involving the HGE or envision and list all allowed cases at once and permanently. In addition, the very definition of “ethical genetic engineering” initially lacks notional specifics because the concept of ethics is per se elusive. Respectively, a proper recommendation would encompass at least the following requirements: (1) long-term trans-generational studies to be carried out; (2) maximally efficient, safe, and non-destructive methods of genetic manipulation to be developed; (3) government regulatory agencies or advisory commissions to be formed as mediators of scientific and public sectors, and (4) the general public (in particular, patients) to be fully informed and educated on the matter of HGE (Murray, Rothstein, & Murray, 1996; Evans, 2002; Council for Responsible Genetics). Only as soon as all conditions are met, the HGE can become a full-fledged medical practice.
In conclusion, human genetic engineering is theoretical apogees of the idea of gene manipulation. Its ambiguous nature suggests that the following century will become a legal, ethical, and medical battlefield where gene therapy will play the role of either a life-saving medical tool or a weapon of human identity destruction. In order to avoid the latter, the society must generate a comprehensive and efficient system of regulations before the HGE becomes the mainstream healthcare method.