Ethics and Policy Issues in Biomedical Informatics

Dr. Sunil Shroff

Prof - Urology & Renal Transplantation.

Sri Ramachandra Medical College & Research Institute, India

BiomedicalInformatics is an inter disciplinary science that encompasses broadly - computer science, medicine, biology and health care and helps provide a platform to create a synergy that can go beyond anything that researchers in any single domain can provide. The umbrella of this new science includes - clinical informatics, clinical research informatics, dental informatics, nursing informatics, veterinary informatics, Pharmacy informatics, imaging informatics, public health informatics, proteomics, genomics and drug design.

It is a relatively heterogeneous field with the patient at its centre and both clinicians and non-clinicians providing a bridge to encompass the best treatment outcomes and patient care. In the last ten to fifteen years, we have seen how the patients health record has evolved from a text based stored medical record in the hospital to an electronic medical record. The next revolution we talk about is the capacity to change this to a genetic medical record and this will be possible due to the advent of new advances in the field of biomedical Informatics. This kind of record may eliminate the majority of congenital health defects but it will also mean more abortions;pre-selection of genetic traits by parents; cosmetic tinkering of existing traits and improving their pedigree in ways that are unimaginable. The commercial aspects of all this for a private enterprise is beyond comprehension. DNA profiling on this line is already available on many health websites.  

The societal problem with scientific advances has been more cerebral. What to us is right or wrong involves our upbringing, our parents and peers notions and takes years to inculcate. Today's research is revolutionary and changes the traditional aspects of life very rapidly. It does not give us the time to let our thinking process evolve. Much of today's research was science fiction till only yesterday. All this has led the majority of the physicians and community being is a confused state as we stand at the crossroads of what we accept and what we reject for the benefit of mankind.

Medical science has so far followed the ethics that was preached by Hippocrates over2000 years ago. However, this to a large extent is antiquated.  But there are certain core principles that still hold good and have withstood the test of time. A physician knows that patients are by and large vulnerable and they have the responsibility to do their best for the patients; their vulnerability is respected and sometimes if necessary compensated. The ethics of new sciences has not even been written but today's ethics is more about individual rights and self-determination. This can often supersede the ethics of the society or the world at large. There are many examples where an individual if given a choice would immediately accept what is not right from a broader perspective. Examples include purchasing a kidney in grey market for a transplant or purchasing eggs for surrogate pregnancy.

The world has recently witnessed two events in the pharmaceutical industry that will perhaps help us re-write some of the patent laws that govern us. They are examples of subsidised drugs produced by local Indian drug companies for mass treatment for AIDS or Leukaemia. In both instances, the international patent laws stood against the interest of the patients. In the end the war has swayed towards the larger interests of the patients, however, the last word on these verdicts is yet to be written.

The current debate in the field of telemedicine is how this new virtual cyber space practice of medicine is changing the traditional doctor-patient relationship, privacy laws and confidentiality issues.  The other ethical areas that are currently being looked at are the end-of-life issues, use of foetal cells for molecular and stem cell research.

If the last century was about technology the challenge of this century will be more about ethics and not so much about what is possible. Are we ready to accept the newer advancement and how are we going to draw the Lakhsman rekha and decide how far should we go.  One of the first such examples will include human cloning - do we accept it. The proponents will at some stage argue that we should clone the best brains in the world for the benefit of mankind.   Who would argue that they would not like the likes of Einstein, Newton or Beethoven to be cloned?  Having said all this, ethics that is constantly being tested in the last ten years is that of organ donation and transplants. As most of our cutting edge scientific advances in biomedical sciences relates to organ regeneration, tissue engineering and cloning; to some extent, the principles of ethics of kidney transplants is an acid test and will help us in evolving and solving many of the future ethical dilemmas that we are likely to encounter in this century.