Advancements in genetic science are often clouded in ethical controversy. Experts discuss a new platform where scientists and public can debate it, and from which education can be disseminated.
- Dr. Ting Wu, Professor of Genetics, Harvard Medical School
Links for more information:
God and Genome
Nancy Benson: Over the last 40 years, more than 5 million children have been born as a result of in-vitro fertilization. Today, IVF is common and accepted by most of society. But that wasn’t always the case – when it was first successfully carried out many people and institutions, including the catholic church, saw in-vitro fertilization as extremely controversial – practice flying in the face of god and nature.
Dr. Wu: When in-vitro fertilization was first made possible, people had vastly different views about that – whether that was a miracle that was to be celebrated or a terrible thing that we were all going to regret eventually – and we now know that in-vitro fertilization now is something that many people embrace.
Nancy Benson: That’s Dr. Teng Wu, professor of genetics at the Harvard Medical School. She says many of the same ethical issue that once clouded IVF now surround another controversial medical advancement – the ability to edit the human genome. But this time Wu and her colleagues have created a platform where scientists and the public can engage in discussion of those controversial issues.
Dr. Wu: I was pretty much a pure researcher until about 10-11 years ago, working in the lab full time, but always curious about what we did in the lab was being translated to the general public and importantly, whether scientist were getting good input from the public – which is who we serve. And as the genetics field was moving quickly and genetic technologies were being developed – I think many many of us felt that it was becoming more and more critical that this two-way communication with those who we serve be wrapped up.
Nancy Benson: Together Wu and few of her colleagues found the ‘Personal Genetics Education Project’ or pgEd. They provide curriculum and training for teachers, brief lawmakers in congressional hearings, run industry forums for companies producing genetic technologies, engage with communities of faith, and even advise Hollywood TV and film producers through the National Academy of Sciences.
Dr. Wu: It’s a big task but we really feel that it’s doable and our greatest goal is to make sure that all segments of society – regardless of their religious background, or their ethnic background, or their educational background, cultural background – that there is no bias and no one is left out of the conversation.
Nancy Benson: Wu is married to genetic researcher George Church, who endorses human genome editing technologies. But she says pgEd doesn’t promote or endorse genetic technology.
Dr. Wu: Our goal has always been just to make sure everyone is aware and if they want to give input, to give input. But, some individuals obviously feel this taking off do find that genetic technologies will either allow them to understand a particular trait or disease that they have. Genetic information can inform someone about their predispositions for certain trains or diseases. I think many people know that genetic information definitely advances research which can produce therapies and for some individuals, for example, who use pre-implantation preventive diagnosis – it gives them the opportunity to understand what the predisposition of that child might be. They’re all different levels of empowerment or understanding that can come from genetic technologies.
Nancy Benson: Wu says that in the past some segments of society were left out of the conversation where controversial issues were concerned.
Dr. Wu: Very little good has come up that, genetics being so personal, that leaving out could be especially painful. When people respond to being left out a lot of dark things can happen.
Nancy Benson: Wu points to the eugenics movement promoted by the Nazis during WW2 as just one example. So it’s not wonder people have fears today regarding genetic technology and it’s possibilities. Just because parents can now technically alter their genome so their baby can be tall, strong, and smart – should they?
Dr. Wu: When I look back, I’m not historian, but when I look back at the eugenics movement and what happened in Europe, it seems to me that if more people were aware of what is happening with an understanding that gives them confidence to stand up and say “No, we will all be safer.” One can set up as many laws as one wants, in the end whether people decide to follow that law or not, I think depends on how well people understand why that law was put into place and what the implications are for not following the law. So, I feel that hand-in-hand regulation and oversight has go to be reaching everybody so they have an innate confident level of comfort with making decision for themselves and when they see something not right, to be comfortable staying up and saying “no.”
Nancy Benson: Today there are laws in the United States regulating gene-editing procedure – many other countries don’t have such restrictions. For example, recently a baby was conceived in the test tube using DNA from 3 parents – a technology that’s illegal in the United States – the American doctors performed the procedure in Mexico.
Dr. Wu: I think that it’s a very complicated issue that has a lot to do with just the culture and history of a nation. I believe business comes into play, I believe individual beliefs come into play; beliefs of individuals that have certain kinds of power, I think faith comes into play, so maybe the differences are reflecting just differences in our nations. I think is very complicated.
Nancy Benson: Wu is well aware of the potential to abuse gene-editing technology – interest in our genetics is growing rapidly, perhaps too rapidly. For example, we’ve reported that direct to consumer genetic testing is growing at a rate of 10% annually and we don’t know where that interest will end.
Dr. Wu: There’s potential for people to use this in away that currently we would say is beyond ’need’ and is more towards possibly ‘greed.’ I also feel the greatest power that keeps power in check are the acquaintances who will respond to someone. Most people respond to those around us and so if, let’s say, someone starts to really abuse genetic technologies it may be that what holds that person in check is those around him or her who know about genetic technologies, who will actually coral that person and restrain them. That’s why I think global understanding is perhaps our greatest source of safety and restraint.
Nancy Benson: Wu hopes that a hundred years from now we’ll be proud of how we as a society handled these difficult questions regarding human genome-editing.
Dr.Wu: Not knowing something is a issue of safety, that’s what we’re trying to avoid. Whether it means being restrictive, whether it means calling for policies, or whether it means being current and flexible, I really don’t know. I just hope that a century from now we’re going to say we did a good job.
Nancy Benson: You can learn more about the Personal Genetics Education Project and even add your two cents worth by visiting the projects website at, pged.org or through a link on our website at radiohealthjournal.net. Our writer/producer this week is Polly Hansen. Our production director is Sean Waldron. I’m Nancy Benson.