While these technologies are monumentally advantageous, they give rise to a number of ethical issues.
Advancements in modern science have allowed for genetic testing to play an increasing and more central role in diagnostics and medical treatment.
It all started with the Human Genome Project in 1990, which is often regarded as one of the greatest scientific feats in history. The project identified the full set of human genes and sequenced them all, allowing scientists to identify, for the first time, genes that are involved in common and rare diseases.
While these technologies are undoubtedly monumentally advantageous, they still give rise to a number of ethical issues, particularly in the context of children.
Like other communities around the world, the Muslim community also wanted to harvest the benefits of these technological advances in diagnostics, but only in a way that aligned with their religious beliefs and moral convictions.
As such, Islamic institutions started to coordinate interdisciplinary discussions between Muslim religious scholars and biomedical scientists who have been engaged in intensive deliberations on the ethical issues surrounding genetics and genomics, including predictive genetic testing.
During the upcoming sixth edition of the World Innovation Summit for Health’s (WISH) global gathering in October, ministers of health, policy makers, health system leaders, and industry experts will come together to discuss one of the summit’s core topics, Islamic Ethics and the Healthcare of Children in the Genetics Era. A research report covering the topic and produced ahead of time will guide the conversations and debate at the event.
The report covers definitions and examples of four main types of genetic testing: premarital (genetic testing before marriage); preimplantation (genetic testing of the embryo before implantation through in vitro fertilization (IVF); prenatal (genetic testing during pregnancy); and newborn (genetic testing of the baby) and provides a systematic overview of the Islamic perspectives on each.
So, what are these ethical issues and what are the Islamic perspectives surrounding them?
The answer depends largely on what type of testing and what results we receive.
In a nutshell, the main ethical dilemmas surrounding predictive genetic testing in the premarital, preimplantation and/or prenatal stage are centered around the notion that individuals with genetic disorders are not “worth” bringing into this world. Not only is this in itself problematic, but it also stigmatizes people living with those conditions.
Alternatively, others have argued that in order to ensure their future children are free from life-limiting diseases or conditions that cause a great deal of suffering, parents have the right (or it may even be an ethical imperative for them) to choose in order to ensure that their children are not prone to disease or suffering.
In the case of newborn screening, the main ethical challenges revolve around the potential of uncovering “secondary findings” which are not related to the primary indication of the test.
When these secondary findings reveal the potential for adult-onset conditions, this becomes particularly problematic as these findings should only be revealed to the individual of concern when they reach the age of consent.
Other harms that are associated with the testing of minors include the potential for these results to have future implications for insurance, employment, and educational opportunities.
Children who are diagnosed with certain conditions through newborn screening can also be subject to social and intrafamilial stigmatization, meaning they get treated differently to their siblings because of their diagnosis.
Recommendations by WISH
After reviewing regional national guidelines as well as the related ethical discourse, the authors of the WISH report offer a number of recommendations for policy makers that shows the wide range of options that the Islamic perspectives offer.
These recommendations can be used to develop nuanced positions and produce clear guidelines for all those involved, while remaining faithful to Islamic tradition.
This is of particular importance and relevance to Qatar and the region given that several Muslim-majority countries with high rates of consanguineous marriages (marriages between first or second cousins), and therefore an increased risk of prevalence of genetic disorders, implement a mandatory screening at the premarital stage as well as newborn screening. Couples who wish to be more cautious can also opt for preimplantation genetic testing as well as prenatal genetic testing.
The report authors agree that for premarital genetic testing, legal enforcement should be approached with caution as it raises serious ethical concerns specifically around the religiously protected authority of autonomous individuals to freely choose their marriage partner.
Currently, in Qatar and the region where premarital testing is mandatory before marriage, partners who are considered genetically “incompatible” (i.e. whose future offspring may have an increased risk of genetic disorders) are referred to genetic counseling but are not legally forbidden from marrying.
The recommendations further emphasise that the process of premarital genetic testing should be managed in a way that minimises risk of violation of genetic privacy of either partner and suggests practical solutions to this dilemma.
It also emphasises that results obtained from preimplantation genetic testing and prenatal genetic testing should be approached with caution and dealt with on a case-by-case basis given the sensitivities and implications surrounding the moral status of an embryo either outside of the uterus or implanted.
These and many other issues and recommended actions will be discussed from Islamic perspectives, in thorough detail by a panel of high-level experts as well as patient advocates, during the WISH 2022 summit in October.
This year’s summit will take place on 4-6 October under the theme of “Healing the Future” and will be the first hybrid edition of the summit, whereby many of the sessions will be made accessible for a global audience to join virtually.
Maha El Akoum is the Head of Content and Research Fellow at the World Innovation Summit for Health, Qatar Foundation’s global health initiative.