Special Session 4 - Medical Professionalism and Ethics II

There are many ethical issues associated with the application of genomic medicine in clinical practice. Although many of these have been debated for decades, the recent advances in genetic sequencing technologies, the development of new genomic diagnostics and advanced therapies, is raising new questions. It is however important to remember that many of the ethical principles invoked in genomics (for example, consent, privacy and confidentiality, etc) are shared across health care, but there are some novel issues which arise with genomics. A recent workshop held by the UK Nuffield Foundation in July 2023 (https://shorturl.at/bqFGN) highlighted nine issues as being particularly important, and that there was a need to develop a best practice approach for tackling ethical issues. It will not be possible to cover all of these areas in the talk, but some key issues to be covered will include (a) sharing results with patients, particularly those which predict the potential for disease decades later; (b) disparities that are being created by genomic medicine, both in terms of the diversity of the data available, as well as the inequities in the availability of genomic technologies for different populations; and (c) ethical issues associated with pharmacogenomics in its broadest sense.

Nephrologists are generally regarded as clinicians having a good holistic approach when managing patients under care. We exercise specialized skills of making use of high technology procedures and also having a general physician approach towards multi-system problems of the patients, taking into account their psycho social need as well. At the same time, the ethical challenges to nephrologists can never be understated. In the principles of biomedical ethics, respect of autonomy, non maleficence, beneficence and justice are four major areas that come into play. 


Kidney transplantation remains the best modality of renal replacement therapy and there is an ever-increasing demand for organ donation. The inability of cadaveric organ donation to meet the needs of the increasing numbers of patients on global waiting lists highlights the important needs for alternate sources for kidneys such as those from living kidney donation.


The most precious gift that can be given is, arguably, a living organ to a person in need of replacement because of failure of that organ. Health care systems across the world also are funded with different levels of national and individual affordability, potentially leading to health inequalities for the sick and risks of exploitation for the poor, especially sometimes through commercialization of transplantation. 


Transplantation is constrained by scarcity of available organs and an ideal system for allocating organs should seek to achieve the greatest good for the greatest number of people. It also must be fair and not disadvantage certain populations. However, policies aimed at reducing disparities also must be balanced with considerations of utility (graft outcomes), cost, efficiency, and any adverse effects on organ utilization. 


Ethical challenges exist in creating a fair and equitable organ allocation system.