9th World Gene Convention, Singapore 2018

Ethical and Social issues in Genomics Research and Synthetic Biology

HOUSTON: Dr. Krishna Dronamraju, President of the Foundation for Genetic Research in Houston, recently delivered the Keynote address to the 9th World Gene Convention in Singapore.

Genome sequencing and genome studies have raised fears of ethical, legal, social and medical concerns with no satisfactory solutions in sight. Foremost among these are the risks of discrimination, public exposure of private records with the consequent fears of possible blackmail, loss of income and employment, loss of insurance protection and medical coverage, exposure of confidential information which could result in divorce and disruption of family life, social stigma, embarrassment, and possible legal actions and other complications. When an individual undergoes whole genome sequencing, they reveal information about not only their own DNA sequences, but also about probable DNA sequences of their close genetic relatives. This information can further reveal useful predictive information about the present and future health risks of relatives.

Hence, there are important questions about what obligations, if any, are owed to the family members of the individuals who are undergoing genetic testing. A major ethical dilemma can develop when the patients refuse to share information on a diagnosis that is made for serious genetic disorder that is highly preventable and where there is a high risk to relatives carrying the same disease mutation. Privacy concerns can also arise when whole genome sequencing is used in scientific research studies.

Are individuals participating in research studies free to leave anytime during the investigation of their family? Are they free to communicate the results to anyone outside or inside the family? How can they handle discrimination in employment and insurance coverage because of their genetic disease?

Dr. Krishna Dronamraju is the President of the Foundation for Genetic Research in Houston and a Visiting Professor of the University of Paris. He is the author of 22 books and numerous research publications in Genetics and Biotechnology.