bioethics, genetic screening, humans, medical genetics, patient rights, research ethics
P Garg. Unforeseen Journey: Genetics to Ethics. The Internet Journal of Law, Healthcare and Ethics. 2006 Volume 4 Number 2.
Genetics is a fast evolving science. Are ethical issues keeping pace with it? This article looks into different various aspects of ethical issues which revolve around genetics. These issues or unanswered questions have been categorized into three types: Research, Diagnosis and Management related ethical issues. An argument in favour of world ethical bodies governing research in human genetics has been put forward.
Science, it is often said, is running ahead of ethics and regulation. Few fields of medicine are developing as rapidly as human genetics. With such developments come new dilemmas and challenges for those working in health care. Rapidly evolving science of medical genetics is leading us to a whole new world of questions, never answered before, relating to the whole idea of being human and doing things restrained by humanness.1 And more so, this rapidly evolving availability of relatively accurate genetic testing for susceptibility to inherited disease, has raised a number of ethical problems for which societies and healthcare professionals are not well equipped or prepared. As human cloning was in news since late nineties, the issues of medical ethics relating to genetics have become paramount in the context of social and cultural orientation we live in. The paradigms involved directly would be related to different spheres of medical sciences. (Table 1)
Different countries have different medico-ethical laws keeping in lines with their socio-economic structure but this step-ups already chaotic situation globally.2 The technique of giving birth to donor babies for the benefit of diseased sibling is legally acceptable in US but was banned in the UK till 21st July 2004 when HFEA took drastic decisions to allow it in special situations. Till now, British couples used to eye America for saviour babies who would donate to help their diseased brother or sister, the technique involves IVF (in vitro fertilization) and PGD (Pre-implantation Genetic Diagnosis).Though IVF is commonly performed in infertile couples but the concept of PGD is still controversial. It is allowed in US for producing saviour babies for the treatment of diseased sibling only.
Research related ethical issues
Research is a prerequisite for medical science to improve and offer better options for the patients and clinicians treating them; should it be directed in the context of ethical grounds of the people directly involved? Well… Off course! There still remains many unanswered question about research in genetics especially in some controversial issues like human cloning; USA banned it in 2003 and in the UK it is illegal as far as reproductive cloning is concerned according to HFEA's policy, however it would consider research involving embryo splitting or nuclear replacement in eggs but the fetus should not be produced.3,4 The main dilemma per se revolves around pros and cons of producing human clone and the ethical hitch they bring with it, for example replacing a child who died in an accident for parents; there are thousands of ethical questions which you can think of in this simple case, for example, Identity of the clone as a new person?5 How would he feel being a replacement for his dead brother or sister? His presence and character were determined not by nature but by what his parents were looking for – is that ethically right? And foremost if at all it would be permitted, how is the border line for deciding, who should have a clone should be set?
There are other ethical questions which are raised directly in relation to research in human genetics and related science. (Table 2)
Diagnosis related ethical issues
Advancement in diagnostic methods has made it more possible for different genetic or hereditary disorders to be diagnosed with more specificity. This has pre and post birth consequences for the very patient, parents, healthcare professionals and also on the resources of the nation. All this leads to new sets of unanswered questions which need lots of thinking and proper assessment before anything could be undertaken. The dilemma here more or less is related to diagnosis of genetic disorders in new born babies or screening for genetic disorders during pregnancy. Laws in majority of western world allow prenatal diagnosis of major genetic disorders like Down's syndrome and offer abortion for the same. But as the list of genetic disorders is growing and becoming inexhaustible, should babies be screened for all genetic disorders and where should the line be drawn in classifying them as benign or serious. For example, if on genetic screening, a fetus is found to be susceptible to Diabetes Type II, what should be done? Should it be aborted? How far parental influence should play a role? If the pregnancy is continued, should parents be counselled about diabetes? If yes, when should the child know he is prone to it? And, should he go on strict life style management from the start of his childhood? Would that be ethical? As you can see that just one case of diabetes is leading to so many ethical questions which need to be addressed before we can actually legalize population screening for it. Some say if we can do a genetic test for a disorder it should be done, so parents have the information. Others say tests for benign disorders are pointless since a positive result would be poor grounds for an abortion. Some feel screening out disorders is akin to rejecting disabled people as valid humans.6
Management related ethical issues
Management of genetic disorders varies from doing nothing to organ transplant. Treatment of major genetic disorders still remains symptomatic and proper screening leading to abortion. Gene therapy is still in its infancy and will take at least a decade or so for its wide spread use. Ethically, treating any disorder should not arise as many questions as diagnosis and research. But, if technology permits us to determine genetic makeup and enhance our sibling's physical and mental characteristics in coming years, should this be encouraged? Undoubtedly, this would cost dear and common man would not be able to afford it, meaning richer people will have better choice and poorer will have less or none. A varied disparity would evolve in humans, a society of super human versus normal. Gene therapy seems very promising with less ethical strings attached.10 Though, body cell gene therapy (gene repaired in patient) is less controversial than germ line therapy (gene repaired in embryo).In body cell gene therapy its possible to counsel the patient and take proper consent from him which is not possible in later.
Finally, to end this endless thinking of what will happen with humans and there own evolved science, I believe that we, healthcare professionals from all over the world need to sit and evolve an approach to genetics with ethical consideration in mind. Global health care organizations should lead the meet and lay guidelines which should be followed by all the countries. Before moving to genetics, a body of elite professionals and lay persons representing their social background should analyze and then let ethical issues evolve to make way for genetics for good of man kind.