Editing Human genetic enhancement (section)

== Ethics ==
{{Close paraphrasing | section|date=December 2023}}
Genetics is the study of genes and inherited traits and while the ongoing advancements in this field have resulted in the advancement of healthcare at multiple levels, ethical considerations have become increasingly crucial especially alongside. Genetic engineering has always been a topic of moral debate among bioethicists.<ref>{{cite journal |last1=Friedmann |first1=Theodore |title=Genetic therapies, human genetic enhancement, and … eugenics? |journal=[[Gene Therapy (journal)|Gene Therapy]] |date=2019 |volume=26 |issue=9 |pages=351–353 |doi=10.1038/s41434-019-0088-1 |doi-access=free|pmid=31273325 }}</ref> Even though the technological advancements in this field present exciting prospects for biomedical improvement, it also prompts the need for ethical, societal, and practical assessments to understand its impact on human biology, evolution, and the environment.<ref>{{cite journal | vauthors = Foster MW, Royal CD, Sharp RR | title = The routinisation of genomics and genetics: implications for ethical practices | journal = Journal of Medical Ethics | volume = 32 | issue = 11 | pages = 635–8 | date = November 2006 | pmid = 17074820 | pmc = 2563298 | doi = 10.1136/jme.2005.013532 }}</ref> [[Genetic testing]], [[genetic engineering]], and [[Stem cell|stem cell research]] are often discussed together due to the interrelated moral arguments surrounding these topics. The distinction between repairing genes and enhancing genes is a central idea in many moral debates surrounding genetic enhancement because some argue that repairing genes is morally permissible, but that genetic enhancement is not due to its potential to lead to social injustice through discriminatory eugenics initiatives.<ref name="Vaughn_2023">{{Cite book | vauthors = Vaughn L |title=Bioethics: Principles, Issues, and Cases |publisher=Oxford University Press |year=2023 |isbn=978-0-19-760902-6 |edition=5th |page=500}}</ref>

Moral questions related to [[genetic testing]] are often related to duty to warn family members if an inherited disorder is discovered, how physicians should navigate patient autonomy and confidentiality with regard to genetic testing, the ethics of genetic discrimination, and the moral permissibility of using genetic testing to avoid causing seriously disabled persons to exist, such as through selective abortion.<ref name="Vaughn_2023" /><ref>{{cite journal | vauthors = Asch A | title = Prenatal diagnosis and selective abortion: a challenge to practice and policy | journal = American Journal of Public Health | volume = 89 | issue = 11 | pages = 1649–57 | date = November 1999 | pmid = 10553384 | pmc = 1508970 | doi = 10.2105/ajph.89.11.1649 }}</ref><ref>{{cite journal | vauthors = Heinsen LL | title = Shouldering Death: Moral Tensions, Ambiguity, and the Unintended Ramifications of State-sanctioned Second-trimester Selective Abortion in Denmark | journal = Medical Anthropology Quarterly | volume = 36 | issue = 4 | pages = 515–533 | date = December 2022 | pmid = 35819201 | doi = 10.1111/maq.12717 | pmc = 10084180 }}</ref>

The responsibility of public health professionals is to determine potential exposures and suggest testing for communicable diseases that require reporting. Public health professionals may encounter disclosure concerns if the extension of obligatory screening results in genetic abnormalities being classified as reportable conditions.<ref name="pmid16507657">{{cite journal | vauthors = Fulda KG, Lykens K | title = Ethical issues in predictive genetic testing: a public health perspective | journal = Journal of Medical Ethics | volume = 32 | issue = 3 | pages = 143–7 | date = March 2006 | pmid = 16507657 | pmc = 2564466 | doi = 10.1136/jme.2004.010272 }}</ref>
Genetic data is personal and closely linked to a person's identity. Confidentiality concerns not only work, health care, and insurance coverage, but a family's whole genetic test results can be impacted. Affected individuals may also have their parents, children, siblings, sisters, and even extended relatives if the condition is either genetically dominant or carried by them. Moreover, a person's decisions could change their entire life depending on the outcome of a genetic test. Results of genetic testing may need to be disclosed in all facets of a person's life.<ref name="pmid16507657" /><ref name="pmid9929717">{{cite journal | vauthors = Grady C | title = Ethics and genetic testing | journal = Advances in Internal Medicine | volume = 44 | issue = | pages = 389–411 | date = 1999 | pmid = 9929717 | doi = | url = }}</ref>

Non-invasive prenatal testing (NIPT) can accurately determine the sex of the fetus at an early stage of gestation, raising concerns about the potential facilitation of sex-selective termination of pregnancy (TOP) due to its ease, timing, and precision. Even though the ultrasound technology can do the same, NIPT is being explored due to its capability to accurately identify the fetus's sex at an early stage in pregnancy, with increasing precision as early as 7 weeks' gestation. This timeframe precedes the typical timing for other sex determination techniques, such as ultrasound or chorionic villus sampling (CVS).<ref>{{cite journal | vauthors = Alfirevic Z, Navaratnam K, Mujezinovic F | title = Amniocentesis and chorionic villus sampling for prenatal diagnosis | journal = The Cochrane Database of Systematic Reviews | volume = 2017 | issue = 9 | pages = CD003252 | date = September 2017 | pmid = 28869276 | pmc = 6483702 | doi = 10.1002/14651858.CD003252.pub2 }}</ref><ref>{{cite journal | vauthors = Kearin M, Pollard K, Garbett I | title = Accuracy of sonographic fetal gender determination: predictions made by sonographers during routine obstetric ultrasound scans | journal = Australasian Journal of Ultrasound in Medicine | volume = 17 | issue = 3 | pages = 125–130 | date = August 2014 | pmid = 28191222 | pmc = 5024945 | doi = 10.1002/j.2205-0140.2014.tb00028.x }}</ref> The high early accuracy of NIPT reduces the uncertainty associated with other methods, such as the aforementioned, leading to more informed decisions and eliminating the risk of inaccurate results that could influence decision-making regarding sex-selective TOP. Additionally, NIPT enables sex-selective TOP in the first trimester, which is more practical, and allows pregnant women to postpone maternal-fetal bonding. These considerations may significantly facilitate the pursuit of sex-selective TOP when NIPT is utilized. Therefore, it is crucial to examine these ethical concerns within the framework of NIPT adoption.<ref>{{cite journal | vauthors = Bowman-Smart H, Savulescu J, Gyngell C, Mand C, Delatycki MB | title = Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues | journal = Prenatal Diagnosis | volume = 40 | issue = 4 | pages = 398–407 | date = March 2020 | pmid = 31499588 | pmc = 7187249 | doi = 10.1002/pd.5555 }}</ref>

Ethical issues related to gene therapy and human genetic enhancement concern the medical risks and benefits of the therapy, the duty to use the procedures to prevent suffering, reproductive freedom in genetic choices, and the morality of practicing positive genetics, which includes attempts to improve normal functions.<ref name="Vaughn_2023" />

In every genetic based study conducted for humanity, studies must be carried out in accordance with the ethics committee approval statement, ethical, legal norms and human morality. CAR T cell therapy, which is intended to be a new treatment aims to change the genetics of T cells and transform immune system cells that do not recognize cancer into cells that recognize and fight cancer. it works with the T cell therapy method, which is arranged with palindromic repeats at certain short intervals called [[CRISPR]].<ref name="pmid33824268">{{cite journal | vauthors = Sterner RC, Sterner RM | title = CAR-T cell therapy: current limitations and potential strategies | journal = Blood Cancer Journal | volume = 11 | issue = 4 | pages = 69 | date = April 2021 | pmid = 33824268 | pmc = 8024391 | doi = 10.1038/s41408-021-00459-7 }}</ref>

All research involving human subjects in healthcare settings must be registered in a public database before the recruitment of the first trial. The informed consent statement should include adequate information about possible conflicts of interest, the expected benefits of the study, its potential risks, and other issues related to the discomfort it may involve.<ref name="pmid29544543">{{cite journal | vauthors = Skierka AS, Michels KB | title = Ethical principles and placebo-controlled trials - interpretation and implementation of the Declaration of Helsinki's placebo paragraph in medical research | journal = BMC Medical Ethics | volume = 19 | issue = 1 | pages = 24 | date = March 2018 | pmid = 29544543 | pmc = 5856313 | doi = 10.1186/s12910-018-0262-9 | doi-access = free }}</ref>

Technological advancements play an integral role in new forms of human enhancement. While phenotypic and somatic interventions for human enhancement provide noteworthy ethical and sociological dilemmas, germline heritable genetic intervention necessitates even more comprehensive deliberations at the individual and societal levels.<ref name="pmid31620286">{{cite journal | vauthors = Almeida M, Diogo R | title = Human enhancement: Genetic engineering and evolution | journal = Evolution, Medicine, and Public Health | volume = 2019 | issue = 1 | pages = 183–9 | date = 2019 | pmid = 31620286 | pmc = 6788211 | doi = 10.1093/emph/eoz026 }}</ref>

Moral judgments are empirically based and entail evaluating prospective risk-benefit ratios particularly in the field of biomedicine. The technology of CRISPR genome editing raises ethical questions for several reasons. To be more specific, concerns exist regarding the capabilities and technological constraints of CRISPR technology. Furthermore, the long-term effects of the altered organisms and the possibility of the edited genes being passed down to succeeding generations and having unanticipated effects are two further issues to be concerned about. Decision-making on morality becomes more difficult when uncertainty from these circumstances prevents appropriate risk/benefit assessments.<ref name="pmid29885329">{{cite journal | vauthors = Brokowski C, Adli M | title = CRISPR Ethics: Moral Considerations for Applications of a Powerful Tool | journal = Journal of Molecular Biology | volume = 431 | issue = 1 | pages = 88–101 | date = January 2019 | pmid = 29885329 | pmc = 6286228 | doi = 10.1016/j.jmb.2018.05.044 }}</ref>

The potential benefits of revolutionary tools like CRISPR are endless. For example, because it can be applied directly in the embryo, CRISPR/Cas9 reduces the time required to modify target genes compared to gene targeting technologies that rely on the use of embryonic stem (ES) cells. Bioinformatics tools developed to identify the optimal sequences for designing guide RNAs and optimization of experimental conditions have provided very robust procedures that guarantee the successful introduction of the desired mutation.<ref name="pmid24906146">{{cite journal | vauthors = Hsu PD, Lander ES, Zhang F | title = Development and applications of CRISPR-Cas9 for genome engineering | journal = Cell | volume = 157 | issue = 6 | pages = 1262–78 | date = June 2014 | pmid = 24906146 | pmc = 4343198 | doi = 10.1016/j.cell.2014.05.010 }}</ref> Major benefits are likely to develop from the use of safe and effective HGGM, making a precautionary stance against HGGM unethical.<ref name="pmid23072719">{{cite journal | vauthors = Smith KR, Chan S, Harris J | title = Human germline genetic modification: scientific and bioethical perspectives | journal = Archives of Medical Research | volume = 43 | issue = 7 | pages = 491–513 | date = October 2012 | pmid = 23072719 | doi = 10.1016/j.arcmed.2012.09.003 }}</ref>

Going forward, many people support the establishment of an organization that would provide guidance on how best to control the ethical complexities mentioned above. Recently, a group of scientists founded the Association for Responsible Research and Innovation in Genome Editing (ARRIGE) to study and provide guidance on the ethical use of genome editing.<ref>{{cite report | vauthors = Enserink M | date = 2018 | title = Interested in responsible gene editing? Join the (new) club. | work = Science News | doi =  10.1126/science.aat7183 }}</ref><ref name="pmid31021207">{{cite journal | vauthors = Montoliu L, Merchant J, Hirsch F, Abecassis M, Jouannet P, Baertschi B, Sarrauste de Menthière C, Chneiweiss H | display-authors = 6 | title = ARRIGE Arrives: Toward the Responsible Use of Genome Editing | journal = The CRISPR Journal | volume = 1 | issue = 2 | pages = 128–9 | date = April 2018 | pmid = 31021207 | pmc = 6636865 | doi = 10.1089/crispr.2018.29012.mon }}</ref>

In addition, Jasanoff and Hurlbut have recently advocated for the establishment and international development of an interdisciplinary "global observatory for gene regulation".<ref name="pmid29565415">{{cite journal | vauthors = Jasanoff S, Hurlbut JB | title = A global observatory for gene editing | journal = Nature | volume = 555 | issue = 7697 | pages = 435–7 | date = March 2018 | pmid = 29565415 | doi = 10.1038/d41586-018-03270-w | bibcode = 2018Natur.555..435J | doi-access = free }}</ref>

Researchers proposed that debates in gene editing should not be controlled by the scientific community. The network is envisioned to focus on gathering information from dispersed sources, bringing to the fore perspectives that are often overlooked, and fostering exchange across disciplinary and cultural divides.<ref name="pmid34050014">{{cite journal | vauthors = Scheufele DA, Krause NM, Freiling I, Brossard D | title = What we know about effective public engagement on CRISPR and beyond | journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 118 | issue = 22 | pages = | date = June 2021 | pmid = 34050014 | pmc = 8179128 | doi = 10.1073/pnas.2004835117 | bibcode = 2021PNAS..11804835S | doi-access = free }}</ref>

The interventions aimed at enhancing human traits from a genetic perspective are emphasized as being contingent upon the understanding of genetic engineering, and comprehending the outcomes of these interventions requires an understanding of the interactions between humans and other living beings. Therefore, the regulation of genetic engineering underscores the significance of examining the knowledge between humans and the environment.<ref name="pmid31620286" />

To address the ethical challenges and uncertainties arising from genetic advancements, the development of comprehensive guidelines based on universal principles has been emphasized as essential. The importance of adopting a cautious approach to safeguard fundamental values such as autonomy, global well-being, and individual dignity has been elucidated when overcoming these challenges.<ref name="pmid31552088">{{cite journal | vauthors = Macpherson I, Roqué MV, Segarra I | title = Ethical Challenges of Germline Genetic Enhancement | journal = Frontiers in Genetics | volume = 10 | issue = | pages = 767 | date = 2019 | pmid = 31552088 | pmc = 6733984 | doi = 10.3389/fgene.2019.00767 | url =  | doi-access = free }}</ref>

When contemplating genetic enhancement, genetic technologies should be approached from a broad perspective, using a definition that encompasses not only direct genetic manipulation but also indirect technologies such as biosynthetic drugs. It has been emphasized that attention should be given to expectations that can shape the marketing and availability of these technologies, anticipating the allure of new treatments. These expectations have been noted to potentially signify the encouragement of appropriate public policies and effective professional regulations.<ref name="pmid12544484">{{cite journal | vauthors = Murray TH | title = Reflections on the ethics of genetic enhancement | journal = Genetics in Medicine | volume = 4 | issue = 6 Suppl | pages = 27S–32S | date = 2002 | pmid = 12544484 | doi = 10.1097/00125817-200211001-00006 | s2cid = 30965311 }}</ref>

Clinical stem cell research must be conducted in accordance with ethical values. This entails a full respect for ethical principles, including the accurate assessment of the balance between risks and benefits, as well as obtaining informed and voluntary participant consent. The design of research should be strengthened, scientific and ethical reviews should be effectively coordinated, assurance should be provided that participants understand the fundamental features of the research, and full compliance with additional ethical requirements for disclosing negative findings has been addressed.<ref name="pmid19366754">{{cite journal | vauthors = Lo B, Parham L | title = Ethical issues in stem cell research | journal = Endocrine Reviews | volume = 30 | issue = 3 | pages = 204–13 | date = May 2009 | pmid = 19366754 | pmc = 2726839 | doi = 10.1210/er.2008-0031 }}</ref>

Clinicians have been emphasized to understand the role of genomic medicine in accurately diagnosing patients and guiding treatment decisions. It has been highlighted that detailed clinical information and expert opinions are crucial for the accurate interpretation of genetic variants. While personalized medicine applications are exciting, it has been noted that the impact and evidence base of each intervention should be carefully evaluated. The human genome contains millions of genetic variants, so caution should be exercised and expert opinions sought when analyzing genomic results.<ref name="pmid29196356">{{cite journal | vauthors = Brittain HK, Scott R, Thomas E | title = The rise of the genome and personalised medicine | journal = Clinical Medicine | volume = 17 | issue = 6 | pages = 545–551 | date = December 2017 | pmid = 29196356 | pmc = 6297695 | doi = 10.7861/clinmedicine.17-6-545 }}</ref>