Openness of science: a big safety valve

On the heels of the recent Supreme Court order, genetic researchers and activists realise the potential and the pitfalls that gene editing holds.The Apex court rejected the plea of a Mumbai woman to abort her 26-week-old foetus, that according to medical reports, suffers from ‘Down Syndrome’, causing a stir amongst medical communities and citizens. Josephine Johnston, Director of Research, The Hastings Centre in New York works on ethical, legal and social issues related to medicine and science. She recently spoke to DNA on the ethical questions that technologies involved in gene editing raises, how parents in the future could have the option of choosing desired qualities in their children, and what this could mean for rights of the disabled.

What are the key ethical issues gene editing raises?

Gene editing has the potential to lead us to question our current social norms. If it becomes easier to prevent the birth of a child with a genetic disability, it could change our definition of what responsible parenting is. It has implications of changing the way society feels about people with disabilities

What’s the current status on embryo tweaking?

We know nothing about a lot of traits like intelligence, sexual orientation and empathy that are considered socially significant. We do know more about some psychiatric disorders. This doesn’t mean that we underestimate the potential of gene editing. I feel that there will be a market for people who want to control traits in their children – though the effect is expected to be very small.

Is law an answer to ensure high ethical standards?

No. For instance, in case of sex selection, you have to work on the various issues that make the birth of a male child preferable in some cultures. They are many aspects of social conditions, such as inequality and poverty that feed these social norms. Laws will need to subsisted with other policy and cultural interventions that deal with the prejudices that was driving it.

Is it fair to place restrictions on science due to potential ethical issues?

The openness of science itself is a big safety valve. We can’t say no to electricity because some people could get electrocuted; you can’t stop pursuing it. The responsibility is on us. Ethical issues are a better problem to have than not have the technology at all. The important thing is to ensure that we have the right systems in place to govern the technology.

How are the options like IVF, sex selection and ability to choose sperm and egg donors shaping norms of parenting?

There are lots of ways to look at what is motivating people. It is important to balance the pressures of using these technologies with a conversation about the importance of being able to accept the child that you have. Why do we talk about children as a gift? What does it mean today? It is possible for a good parent to know how much to control the future of their child with these innovations and when to hold back, and let nature take its course.