State Pushes For More Organ Donors Fall Flat (So Maybe Pay Big Bucks?)

In this 2011 photo, people fill out forms in which they can register as an organ and tissue donor, as they apply for a California drivers license at a DMV office in Los Angeles. (Nick Ut/AP)

In this 2011 photo, people fill out forms in which they can register as an organ and tissue donor, as they apply for a California drivers license at a DMV office in Los Angeles. (Nick Ut/AP)

For the nearly 80,000 Americans who are on waiting lists for organ transplants, this is probably not news: Though all 50 states have been trying to encourage people to sign on as donors for years, all those efforts have barely made a dent in the organ shortage.

That’s the central finding of a new paper just out in the journal JAMA Internal Medicine, and it prompts a provocative commentary in the same issue — Time To Test Incentives to Increase Organ Donation — co-written by Yale’s Dr. Sally Satel. An excerpt:

“We believe it is time for disruptive innovation. By this concept, we mean compensating donors, not simply seeking to soften the financial ramification of donation. It is time to test incentives, to reward people who are willing to save the life of a stranger through donation. … Our current transplant system is inadequate for the task of boosting the volume of organs needed for life-saving transplantation. Altruism is not enough. Pilot trials of incentives are needed.”

Food for thought: The commentary suggests not a free market and lump sums of cash for organs, but a government- or charity-run system of “in-kind reward,” like, say, a tuition voucher for about $50,000, or payments covering funeral expenses. Readers, what do you think?

I spoke with the lead author of the article that documented the failure of current policies to make a dent in the organ shortage: Dr. Paula Chatterjee, a clinical fellow in Internal Medicine at Brigham and Women’s Hospital. Our conversation, lightly edited:

How would you sum up what you found?

We know that thousands of patients die every year because of shortages in organ supply, and finding ways to address this public health issue is critical. States have passed a variety of strategies over the past few years, but we didn’t know if any of these strategies have been successful. What we found is that for the most part, these strategies have had almost no effect on increasing organ transplants and donations over the last few decades.

Basically, what we can say is that in states that adopted these strategies versus those that did not, the rates of donation and transplantation were essentially the same. The only strategy we found that may have had a very modest effect is the creation of revenue pools — which is basically a way for a state to put aside a pool of money, whether it’s from voluntary contributions or state-dedicated funds, to promote organ donations in whatever way the state feels would be helpful. And even that policy alone had a pretty modest effect.

Is it just that it’s too big of an ‘ask’ for policies that nibble around the edges? Continue reading

Why We Need To Talk Now About The Brave New World Of Editing Genes

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(Image: NIH)

It was standing room only in the Harvard Medical School auditorium last week, the atmosphere electric as an audience of hundreds hummed with anticipation — for a highly technical talk by a visiting scientist, Dr. Jennifer Doudna of Berkeley. Near the front sat the medical school’s dean, Dr. Jeffrey Flier.

Dr. Jennifer Doudna (Vimeo screenshot)

Dr. Jennifer Doudna (Vimeo screenshot)

“I don’t believe in my years at Harvard Medical School I’ve ever seen a crowd of this magnitude for a lecture of this kind,” he said.

The draw?

“The draw is, this is one of the most exciting topics in the scene of biology today.”

That buzzworthy biology topic is a revolutionary new method to “edit” DNA that has spread to thousands of labs around the world just in the last couple of years.

Suddenly, it’s no longer purely science fiction that humankind will have the ability to tinker with its own gene pool. But should it?

Learn This Acronym: CRISPR

The hot new gene-editing tool is known by the acronym CRISPR, for “clustered regularly interspaced palindromic repeats.” It acts as a sort of molecular scissors that can be easily targeted to cut and modify specific genes.

(Source: NIH)

(Source: NIH)

CRISPR occurs naturally in bacteria, but scientists are now learning to harness its power to alter DNA for research across the board — cancer, HIV, brain disease — even to make better potatoes. Just this week, the journal Science published a paper on possibly using CRISPR to try to stop female mosquitoes from spreading deadly diseases.

CRISPR looks particularly promising for human diseases that hinge on just one gene, like sickle-cell anemia or cystic fibrosis. Someday, the hope is, CRISPR and gene-editing tools like it will let us cure what are now lifelong diseases by simply deleting and replacing a baby’s “broken” gene. Continue reading

Q&A: A Taste Of The Looming Ethical Debate On Gene-Editing Humans

Boston University bio-ethicist George Annas discusses the ethical issues raised by new gene-editing tools that may eventually allow humankind to control its own genetic legacy. (Courtesy)

Boston University bio-ethicist George Annas discusses the ethical issues raised by new gene-editing tools that may eventually allow humankind to control its own genetic legacy. (Courtesy)

The powerful new gene-editing tool CRISPR is sparking excitement in biology labs — but also calls for a broad discussion about limits, and whether we should ever meddle with the human gene pool. I asked Boston University bio-ethicist Prof. George Annas for his take. Our conversation, edited:

CG: So scientists are saying we should start talking about using CRISPR to alter the human gene pool. What would a conversation like that even sound like?

GA: The conversation is not about CRISPR per se. It’s about: Now that we have techniques to edit the human genome, should we edit the human genome, and if so, for what purposes?

We’ve had this conversation around cloning in the mid-1990s. Most but not all scientists, and almost everyone in the public, agreed we should not try to clone a human being, use our genetic knowledge to make a genetic duplicate human being. And we’ve had very good luck: it’s turned out not to be possible to clone a human being. At least, we don’t know how to do it yet.

But with CRISPR, it seems much more likely that sometime in the not-too-distant future — though it may be decades, this gene editing technology will be dependable enough that someone is likely to try to use it on a human embryo.

This will be a big and dangerous step—dangerous for sure to the resulting child. Many people have no trouble with using genome editing on animals and plants, so long as you’re not harming the animal in a way that makes it suffer. But children do suffer. So the first question is: Should we ever try to edit the genomes of human embryos that are destined to become children? I think the answer is no.

I agree with the scientists who say that it’s definitely not safe to do it now because we can’t predict what other things CRISPR will do to the rest of the genome. We know very little about the genome, and what impact taking out one or a series of base pairs — with CRISPR, you can take a series out — is going to do to the rest of the genome, and hence to the whole organism as it develops.

And the problem with germ-line genetic engineering at the level of the embryo —

— Making genetic changes that will be passed on forever —

Potentially, yes. First they will be passed on to this baby, and this baby will become an adult. And if this “engineered” baby has children, the new traits will be passed on to the next generation, and so on.

So an initial question — and scientists agree with this — is, how many generations do you need to prove that a particular method of genome editing is safe? I would guess most scientists would say, at least four or five. Well, we can do four or five generations in zebrafish or in rats or in fruit flies pretty quickly.. In humans, however, it’s going to take you probably 100 years. So, how many children would you want to follow, and their offspring, for 100 years before you are ready to conclude that editing the human genome is safe for children?

That strikes me as a question that we can’t answer. Because we cannot prove it safe without putting human children at terrible risk of harm, we can’t subject any human child to this experiment. That’s because children can’t consent, and their consent is necessary as a matter of ethics because there are good reasons to anticipate that something will go horribly wrong.

And more broadly, there are potential implications for the whole human race, if we start engineering evolution — ? Continue reading