The ethics of predictive technologies in biomedicine will be addressed in this year’s Laurence Crowley Lecture which takes place in the UCD Michael Smurfit Graduate Business School next Monday, January 20th. Delivered by international human rights lawyer and bioethicist Prof Judit Sándor, the lecture will explore the increased use of ever more accurate predictive technologies in areas such as human reproduction, cancer therapy and biomedical research, and the ethical challenges it poses.
A professor at the Department of Political Science, the Department of Law and the Department of Gender Studies at the Central European University (CEU) in Vienna, Sándor is also the director of CELAB (Centre for Ethics and Law in Biomedicine) in Budapest. Over the years, she has published numerous books and journal articles in English, French and Hungarian in the fields of human rights and bioethics.
“Medicine has always sought to predict future health conditions,” Sándor explains. “But it was the Human Genome Project, the establishment of biobanks, and the emergence of myriads of genetic test results at the end of the 20th century that brought a revolutionary change in the use of predictive technologies. Even in the 1970s and 1980s people were more or less accustomed to living with uncertainties of their medical future but now there are increasing expectations regarding various forms of medical prediction.”
She points out that just 40 years ago expectant mothers were not aware of the sex of their children until they gave birth. Moreover, they knew almost nothing about the health of their future offspring.
“Routine ultrasound examination was not in use until the 1970s,” she says. “Now people have many different means of prenatal testing and even preimplantation testing in case of in-vitro fertilisation.”
While such advances have brought enormous benefits, they also present ethical dilemmas. For example, the use of genetic information to predict health outcomes for individuals or a predisposition to certain conditions could be used to exclude people from employment and services such as insurance.
The ethical dimension of predictive tests was dealt with as far back as 1997 in the Oviedo Convention, Sándor notes. “Article 12 of the convention is dedicated to predictive genetic tests. This article stipulates that ‘Tests which are predictive of genetic diseases, or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling’.”
The patient’s feelings also have to be taken into consideration when using predictive technologies. “Some people prefer to know the possibility of their future disease, while others might feel paralysed by knowing their future problems today,” she says. “With the introduction of genetic tests, bioethicists started to emphasise the option of the ‘right not to know’. It is based on the recognition that although it is useful to detect the possibility of a future medical condition, not everyone would like to live in fear, especially where there is no effective medical treatment available for the condition.”
There is also a need for counselling when patients have been given such information. “Genetic counselling provides information and support to people who have, or may be at risk of having, certain genetic conditions,” says Sándor. “During a consultation, a genetician meets an individual or a family to discuss genetic risks or to diagnose, confirm or rule out a genetic condition. It serves the interest of patients by helping them to make informed decisions, including reproductive decisions or about certain medical treatments.”
There is also the challenge of ensuring that patients have sufficient knowledge to give informed consent. “Informed consent is a great invention both in law and in bioethics,” she notes. “It is based on the knowledge asymmetry between the doctor and the patient. Since the patients bear all the physical consequences of the intervention, they need to know the expected risks and benefits and other relevant information in order to be able to consent to the treatment.”
In the case of predictive medicine, however, even the healthcare provider does not possess all the information. “And even if they do, it is very challenging to communicate the different levels of causation, and probabilities. Furthermore, often there is an ‘unknown unknown’ element in the case of novel procedures.”
Finally, there is the need to consider technoethics within bioethics. “Artificial intelligence is used increasingly in the assessment of predictive tests, in detecting certain medical conditions and reaching diagnoses based on them,” Sándor explains. “Technoethics deals with the ethics of technology, technological change, technological advances and their applications.”
She believes the established infrastructure of norms which have been developed for bioethics over many years can also be used as a model for this still nascent field. “Technoethics may benefit from bioethics where many institutional solutions such as ethics reviews are already available,” she concludes.
The 2025 UCD Smurfit School Laurence Crowley Lecture Series will take place at 6:30pm on Monday, January 20th. This event is free and open to the public. Click here to register.