Bioethics is an interdisciplinary study: it exists at the interface between life and health sciences and law, ethics, religious and sociological concerns. The advancements in modern medicine have been subjected to qualification from different groups, on the grounds of issues such as abortion, informed consent, and individual choice.
Health agencies, governments, and the legal system all play a nuanced role in providing appropriate regulation in response to research and medical breakthroughs.
What is Bioethics?
The most pertinent example of the issue of bioethics is observed at present with the ongoing pandemic. The issues of misinformation, fear, personal choice, and vaccine distribution have created serious issues in global health policy. The post-truth era promulgated by populist politicians such as Donald Trump and Jan Bolsonaro has fomented greater concerns around personal liberty, consent, and vaccine efficacy. COVID-19 is a communicable disease: it, therefore, affects everyone in the community, especially healthcare personnel, frontline staff, and immune-compromised.
Many arguments of the vaccine-hesitant relate to the issue of personal choice: social distancing, masks, and vaccines. Vaccine hesitancy in underrepresented communities presents another challenge due to institutional racism and a distrust of medical authorities due to events like the Tuskegee Syphilis Study.
The re-introduction of mask mandates and the introduction of mandatory vaccination for certain occupational roles has been met with hostility in the USA. In Europe and the United Kingdom, the issue around so-called “vaccine passports” has faced serious backlash. In developing nations, the issue of vaccine distribution continues to challenge their nations’ healthcare systems.
Assisted reproductive techniques
One of the greatest discoveries in the past few decades has been in vitro fertilization (IVF). It has allowed couples with fertility issues, LGBTQ+ people, and many others to conceive children naturally. This has presented challenges to the legal system to provide recognition for the parents.
In countries like India and Ukraine commercial surrogacy is legal. Other countries such as Germany, Sweden, and Italy do not recognize surrogacy. The ambiguity surrounding surrogacy often leaves parents in an ambiguous situation, especially if they are not protected by other legal frameworks like adoption.
Improvements in reproductive health also present new challenges. Non-invasive prenatal testing and IVF allow parents to have greater information about health, potential genetic disorders, and characteristics such as sex. Once again, this presents ethical dilemmas surrounding the termination of pregnancies or choice of the embryo on factors such as sex or genetic disorders. In countries with liberal abortion laws the rate of termination for Down’s Syndrome embryos is very high (e.g., Iceland and the UK).
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Stem cell research
Termination of pregnancies also presented another major concern: embryonic stem cell research. Before the development of Induced Pluripotent Stem Cells (IPSCs), embryonic stem cells provided the best reservoir. Stem cells provide excellent opportunities to study processes such as development, regeneration, and cancer.
Ethical concerns about their use prompted a pause on stem cell research during the 2000s and, once again, during the Trump administration. The disposal and governance of fetal tissue post-termination is also a concern.
The Human Genome Project in the 1990s and early 2000s sequenced the human genome for the first time. This presented new opportunities and challenges for bioethics. These concerns have been accelerated by the advent of next-generation sequencing.
Whole genomes can now be sequenced for less than $1000. Issues around the storage, accessibility, and ownership of this sensitive data pose major concerns in terms of eugenics, discrimination, and racism. Private companies are now offering this to individuals for genealogical or health purposes; this can lead to unauthorized sharing of sensitive information or misinformation, if not suitably regulated.
A related and similarly controversial issue relates to gene editing. Advancements in technology around DNA editing, most importantly clustered regularly interspaced short palindromic repeats (CRISPR)-Cas9, present exciting opportunities to provide therapy for heritable and genetic disorders. Many of these currently lack effective therapies.
The issue of editing germline DNA has raised concerns about eugenics. A Chinese scientist flouted regulation around DNA editing and has subsequently been banned from practicing research. He edited genes in two embryos to make them less susceptible to HIV. This led to an outcry from scientists that the technology was too premature to undertake such research.
CRISPR-Cas9 still presents issues in terms of off-target editing. Gene editing is essentially banned in the EU; limited somatic gene therapies are permitted in the USA. Health agencies and appropriate bodies (FDA/EMA) play a critical role in balancing ethical concerns, efficacy, and research advancement.
Consent and ethics around biological material
Meta-data analysis is now an integral part of medical research, informing Genome-Wide Association Studies, drug sensitivity investigations, oncology, and preclinical research. Lessons learned from the misappropriation of biological material taken from Henrietta Lacks in the 1950s have demanded greater regulation around the storage, management, analysis, and protection of human samples.
There is still no international consensus on informed consent: many individual institutions adopt different models which vary in the degree of information and freedom it affords.
Bioethics remains an important touchstone to temper the advancements made by modern medicine. Religious, cultural, social, and racial ideologies will continue to inform and shape the legislation and regulation around these new ideas.
Quantum computing and other advances will only accelerate how much personalized data will be generated. The ongoing debates around ownership, storage, and protection of this data will become even more important.
- Greely, H. T. (2019) ‘CRISPR’d babies: human germline genome editing in the “He Jiankui affair”’, Journal of law and the biosciences, 6(1), pp. 111–183. doi: 10.1093/jlb/lsz010.
- Hill, M. et al. (2017) ‘Has noninvasive prenatal testing impacted termination of pregnancy and live birth rates of infants with Down syndrome?’, Prenatal diagnosis, 37(13), pp. 1281–1290. doi: 10.1002/pd.5182.
- Jackson, C. et al. (2019) ‘Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives’, BMC Medical Ethics, 20(1), p. 43. doi: 10.1186/s12910-019-0380-z.
- Patel, Nayana Hitesh et al. (2018) ‘Insight into Different Aspects of Surrogacy Practices’, Journal of human reproductive sciences, 11(3), pp. 212–218. doi: 10.4103/jhrs.JHRS_138_17.