What ethics should guide genetic research/testing

What ethics should guide genetic research /testing

Abstract : The tremendous growth in knowledge about genes and genetic technologies will eventually enable us to know individual genotypes and susceptibilities to disease , perhaps even before birth . Each new genetic test developed raises serious issues for individuals and society on the circumstances under which genetic information should be sought and the uses that should be made of such information . Ethical reflection and analysis will help us to prepare for the responsible use of information about genotypes so that individuals , both now and in the future

, are benefited and not harmed , so that justice is served , and so that confidentiality and privacy , and respect for the autonomy , dignity , and differences of each individual , are preserved

Developments in genetics today are challenging the priority normally given in medical care to the principle of respect for patient autonomy In addition to autonomy , two other principles , beneficence and justice have moved to the fore . Because of the familial nature of genetic information , decisions made on behalf of a single patient can produce benefits or harms to relatives . Autonomy and justice can conflict when individual decisions based on genetic information threaten to stigmatize or disadvantage others in one 's ethnic group who share one 's genes (Green , 1999

Public debate about the ethics of developments in human genetics research has a complex history . Prior to the advent of the Human Genome Project , knowledge and understanding of human genetics attracted relatively little interest from members of the public or the media Diseases that were known to have a genetic basis were rare , and most people were unfamiliar with the principles of heredity . However , during the first half of the twentieth century , eugenics had been a feature of several government policies that were widely debated at the time (Ridley , 1999 . One legacy of eugenics was the establishment of an international framework of ethical guidance to protect human subjects participating in research

Over the last decade , advances in molecular biology and the establishment of the Human Genome Project in the late 1980s have led to the identification of hundreds of genes , the deletion or mutation of which cause diseases that in most cases are rare . As a result , much greater attention began to be paid to ethical , social and legal issues associated with these advances (Ommen et al , 1999 . In particular , the prospect of pre-implantation genetic diagnosis , the increasing use of selective termination following pre-natal diagnosis , and the use of predictive testing for late-onset diseases have been widely debated Research to develop cell-based therapies that use fetal or embryonic cells has proved especially controversial (Thomas , 2004

Advances in molecular genetics have ushered in many new diagnostic therapeutic and potentially preventive practices . For example , there are currently over 200 genetic conditions for which test are available , most of which are single gene diss (Sanderson et al , 2004 . Among these are carrier tests for disease causing alleles (e .g . Tay-Sachs disease beta thalassemia , cystic fibrosis and sickle cell disease screening tests for newborns...