Ethics and Policy Issues In Biomedical Informatics

Dr. Sunil Shroff

Prof -Urology & Renal Transplantation.

Sri Ramachandra Medical College & Research Institute, India

BiomedicalInformatics is an interdisciplinary science that encompasses broadly - computerscience, medicine, biology and health care and helps provide a platform tocreate a synergy that can go beyond anything that researchers in any singledomain can provide. The umbrella of this new science includes - clinicalinformatics, clinical research informatics, dental informatics, nursinginformatics, veterinary informatics, Pharmacy informatics, imaging informatics, public health informatics, proteomics, genomics and drug design.

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

Thesocietal problem with scientific advances has been more cerebral. What to us isright or wrong involves our upbringing, our parents and peers notions and takesyears to inculcate. Todays research is revolutionary and changes thetraditional aspects of life very rapidly. It does not give us the time to letour thinking process evolve. Much of todays research was science fiction tillonly yesterday. All this has led the majority of the physicians and community beingis a confused state as we stand at the cross-roads of what we accept and whatwe reject for the benefit of mankind.

Medicalscience 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 thatstill hold good and have withstood the test of time. A physician knows thatpatients are by and large vulnerable and they have the responsibility to dotheir best for the patients; their vulnerability is respected and sometimes if necessarycompensated. The ethics of new sciences has not even been written but today sethics is more about individual rights and self determination. This can oftensupersede the ethics of the society or world at large. There are many exampleswhere an individual if given a choice would immediately accept what is notright from a broader perspective. Examples include purchasing a kidney in greymarket for a transplant or purchasing eggs for surrogate pregnancy.

Theworld has recently witnessed two events in the pharmaceutical industry thatwill perhaps help us re-write some of the patent laws that govern us. They areexamples of subsidised drugs produced by local Indian drug companies for mass treatmentfor AIDS or Leukaemia. In both instances the international patent laws stoodagainst the interest of the patients. In the end the war has swayed towards thelarger interests of the patients, however the last word on these verdicts isyet to be written.

Thecurrent debate in the field of telemedicine is how this new virtual cyber spacepractice 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 theend-of-life issues, use of foetal cells for molecular and stem cell research.

Ifthe last century was about technology the challenge of this century will be moreabout ethics and not so much about what is possible. Are we ready to accept thenewer advancement and how are we going to draw the Lakhsman rekha and decidehow far should we go.  One of the firstsuch examples will include human cloning - do we accept it. The proponents willat some stage argue that we should clone the best brains in the world for thebenefit of mankind.   Who would arguethat they would not like the likes of Einstein, Newton or Beethoven to becloned?  Having said all this, ethicsthat is constantly being tested in the last ten years is that of organ donationand transplants. As most of our cutting edge scientific advances in biomedicalsciences  relates  to organ regeneration, tissue engineeringand cloning; to some extent the principles of ethics of kidney transplants isan acid test and will help us in evolving and solving many of the futureethical dilemmas that we are likely to encounter in this century.