bioethics

It's our special look back over the entire decade which has Nathan and Laura firing on all fours. Not only do we discover their genomic highlights of the last ten years--ups and downs-- they also pull out their special "future glasses" and come up with a provocative list for the next ten. You don't want to miss this.

But first, we do cover December and that kerfuffle over the George Church dating app. And the genomics of income--really? Did you go for that?

Theral, Nathan, and Laura for an extended broadcast. Happy 2020!

Designer babies. The term means many things to many people. To some it means kids only dressed in Gucci.

Some say that by doing pre-implantation genetic screening, we are already living in the age of designer babies. Others have been holding out for that time when humans edit their own germline offering the new progeny not only disease repair, but also enhancements. It's also argued there’s a third category in the middle there somewhere, a protection against disease in the future. That’s what He Jiankui attempted.

We don’t know yet if Jiankui was successful. But we know that if he wasn’t, he showed us that the next success is just around the corner. And the next.

“This story is getting more sci-fi every minute. Michael Crichton couldn’t have made this stuff up,” tweeted Eric Topol of the Scripps Institute as the He Jiankui saga unfolded.

“That tweet is in many ways wrong. Science fiction of course can imagine it. Michael Crichton could and did make it up. But other science fiction writers who are more skillful than Michael Crichton have been talking about messing with germline for a long time now."

That’s today’s guest, award winning sci-fi author Kim Stanley Robinson (The Mars Trilogy, Red Moon) at the outset of today’s show. What sets Stan (as he's called) apart from many of those other sci-fi writers, is that he doesn’t think it practical to enhance humans genetically. He’s thought about it his entire career, and like going faster than the speed of light, it’s one of those impractical barriers, he says.

"What would you change? How would you know that was going to make it better without running human experimentation which can't be done. It's not just ethics, it's practicality. We wouldn't know what to do to make ourselves smarter or stronger."

Wait. Did you hear what I heard?! This is a sci-fi writer who specializes in thinking into the future, and he doesn’t think humans can be enhanced!

Well, either he has some mighty big convincing to do, or this was the biggest bomb of an interview ever. I mean, come on, of course humans can be enhanced.

Right?

What a week for Americans . . . What a week for genomics!

The Supreme Court rulings that Americans can keep their Obamacare and can all get married - no matter what state they live in - added the final good news to a week of genomics festivities around the country.

But it's not all positive news this week. The New York Times featured a diagnostics company under review by Medicare for fraud. Allegedly, the New Orleans based Renaissance Rx has been paying doctors to sign up patients for a huge trial of genomic based tests, even when the patients didn't qualify.

And, at the suggestion of NYU's Art Caplan, we went out in search of some modern day biblical prophets to see what will be the future of life science.

We'll be off next week, so we'll say it now, happy birthday, America!

 Art Caplan is a prodigious writer on the topic of medical ethics. How prodigious? How about thirty-two books and over 700 peer reviewed papers on ethical conundrums ranging from organ donation to end of life care.

He spends about half his time as a public figure, engaging the lay audience, for example, through op-eds like his recent piece for the Washington Post arguing that doctors who oppose vaccination should lose their license. The other half of his time he spends developing materials meant for an academic audience.

In today’s interview, Art begins by saying that ethical issues around the genome editing of plants and animals are much more pressing today than the current furor over human germline editing. That we can leave to our grandchildren, he says. What we must pay more attention to now is the introduction of genetically engineered mosquitos into the ecosystem.

Well versed in all of the major ethical issues which have surfaced here at Mendelspod, including the rise of prenatal diagnostics and abortions and the evolution of privacy, Art is pro science and technology, yet still sees himself like a “biblical prophet."

Just what is the role of a bioethicist? Is it possible to slow down science and technology?

A very unique biotechnology event took place this week.

BEINGS 2015, or the Biotech and the Ethical Imagination Global Summit, was held at The Tabernacle, a former church turned concert hall in Atlanta, Georgia. The venue was not the only unusual thing for a summit about science. Speakers at the meeting included a well known linguist, a famous Canadian novelist, and Catholic rector along with professors of bioethics, law, and, of course, biology.

The summit was not particularly about science, but about biotech in a cultural context. Speakers pursued some of the most daunting questions humans face: Should we ever try to slow science down? Is this even possible? And if it is, who should be the regulators?

Chris Gunter is an Associate Professor at Emory University, host of the event. She not only attended the meeting but was one of the delegates who took part in a session after the main conference. The delegates were tasked with arriving at a consensus on standards to guide the future of biotechnology. That’s all.

“There’s never been an event like this before,” says Chris, a former editor at Nature, at the outset of today's show.

Guest:

Misha Angrist, Author, Assoc. Professor, Duke Institute for Genomic Sciences

Listen (7:25) New MA in Bioethics and Science Policy

Listen (7:58) Can we embrace NIPT without losing compassion for those with developmental disabilities?

Listen (3:24) How does the process of bioethics work?

Listen (7:41) The unsung heroines

Duke University's Institute of Genome Sciences and Policy will be gone on July 1st. It was announced earlier this year that the flagship institute will be broken up into several new programs. This gave us the perfect excuse to talk about science policy and bioethics challenges in a two part interview with an old Mendelspod friend, Misha Angrist. Misha is an associate professor at Duke and a well known author (Here is a Human Being: At the Dawn of Personal Genomics). He'll be working with Nita Farahany in the new Duke Science and Society Program which is introducing an MA in Bioethics and Science Policy later this fall.

Part I of Misha's interview begins with a discussion about the new masters degree, a first of its kind, and then moves on to a broader discussion of prenatal diagnostics (NIPT). Misha shares some of his concerns with the rapid uptake of prenatal testing, summing up with a question:

"Can we embrace NIPT without losing our compassion for people with developmental problems?"

Misha says he's not a bioethicist (why doesn't anyone want to call themselves a bioethicist?) but then offers some insight into the process of bioethics.

"One of the problems that bioethics has is that we like to traffic in the binary, that things are either/or, and we pit things against each other. That's not always appropriate."

But the meat of the interview has to be Misha's passion for the genetic counselor. Misha jokes about his own path as an "almost" genetic counselor, then goes on to say that:

"Genetic counselors are unsung heroes--or heroines, since the overwhelming majority of them are female. They have an impossible, thankless job. They have to deliver bad news very often to people who may or may not be prepared to hear it."

Stay tuned for Part II of the discussion where Misha shares his thoughts on 23andMe and the future of DTC testing.

Podcast brought to you by: See your company name here. - Promote your organization by aligning it with today's latest trends.

Guest:

Sultan Meghji, Founder, Reformation Medicine

Listen (4:20) The end of technology as a specialty

Listen (4:12) Sequencing devices still a bottleneck for clinical genomics

Listen (4:39) How to become a bioinformatician in six months

Listen (4:39) Basic scientists vs. technicians

Listen (8:19) Going through the Industrial Revolution of digital health

Listen (5:05) Do you think about bioethics?

Listen (4:49) Yes to regulation, and yes to access for everyone

Data scientists like Sultan Meghji are a highly valued species in today's world. Beginning his career at the National Center for Supercomputing Applications (NCSA) where he worked on original internet technologies, Sultan has used his expertise in several industries, including finance, air transportation, and now biotechnology.

We've had Sultan on for a couple shows already, and his broad experience and far reaching vision made him an obvious choice for our series, The Bioinformatician Bottleneck.

"We could graduate ten times what we're graduating every year for a decade, and I still wouldn't be convinced that we have enough [bioinformaticians]," he says in today's interview.

What to do about it? Sultan has suggestions, one of which is to have a "Khan Academy style program for How to Become a Bioinformatician in 6 Months." What about the years it takes to train great basic scientists in an age when biologists are already being called "mere technicians?" Sultan says technicians can handle much of the work of commercializing research.

Sultan goes on to suggest there are other important bottlenecks, including the sequencing tools space. Does he stop to think about bioethics? And is he for or against FDA regulation of personal genomic information? Today's show is far reaching and centered around Sultan's goal of bringing genomics to the masses.

"It's almost like the Industrial Revolution of digital healthcare," he says. "We're going to call it something else, but . . .at some point my blood, or some part of me, is going to go into a diagnostic black box, and out is going to come some recommendation that a doctor didn't actually look at. And I'm going to take it to the bank."

Podcast brought to you by: Roswell Park Cancer Insititute, dedicated to understanding, preventing and curing cancer for over 115 years.

Guest: Hank Greely, Professor of Law, Stanford

Chapters: (Advance the marker)

0:39 What led you to bioethics?

3:51 Problems that can't have clean answers

7:27 How do you know when you're successful?

11:17 Informed consent, privacy

20:18 What is your definition for ethics?

25:35 Intentional selection/eugenics

30:02 Carefully drawn regulation will help the industry

The advance of biotechnology presents society with some thorny issues. And it's just these problems which Hank Greely, a law professor at Stanford, seeks out. In today's interview, Greely asserts that, as if it wasn't already tough enough pursuing the scientific problems, there are others which are hard in different ways.

"Some of these problems can't have clean answers where principles that we really care about generally are in conflict," he says. "The best you can do is look for less bad compromises."

What are Greely's ideas on incidental or secondary findings? On informed consent and privacy? On eugenics? What is his definition for ethics in general? What for many in the industry is a briar patch, Greely nimbly dances through with aplomb.

Podcast brought to you by: Chempetitive Group - "We love science. We love marketing. We love the idea of combining the two to make great things happen for your marketing communications."

Podcast brought to you by: Chempetitive Group - "We love science. We love marketing. We love the idea of combining the two to make great things happen for your marketing communications."

Guest: Nola Masterson, Founder, Science Futures

Chapters: (Advance the marker)

0:59 A career with many "firsts"

5:00 Some very creative financing models in the early days

9:11 Going for the "big one" and the founding of Sequenom

17:08 What excites you about the industry today?

20:10 Bioethics and the Dalai Lama

23:47 The open science conflict

26:16 Bullish about the IT industry bringing biotech into the 21st Century

28:25 A childhood dream come true

Today's show will give you some of everything. Our guest is Nola Masterson. She was the first biotech analyst on Wall Street, she's a founder of Sequenom, and she blazed trails in venture capital. Ever on the front lines, she reminisces about earlier times, but also weighs in on issues of today. What perspective has her career given her on bioethics? What does she think of the strong movement toward "open science." Never at a loss, Nola Masterson has been called "the guru of biotech."