The NIH Director
Dr. Collins’ Acceptance Remarks on the Pro Bono Humanum Award of the Galien Foundation
Francis S. Collins, M.D., Ph.D.
October 16, 2012 – New York City
Good evening! It is with gratitude and humility that I accept this recognition. I am especially awed at having been presented with this award by Elie Wiesel, who is one of my lifelong heroes. And I am humbled to stand where so many other great humanitarians have stood… from the first winner, Roy Vagelos, in 2007, to Bill Clinton two years ago, to Paul Farmer last year. I can only imagine accepting this recognition if it is understood that this responsibility… and the progress we have made so far… has been contributed to by many, many others over the years.
Origins of ethics and moral behavior
The citation refers to the ethical implications of scientific research. Perhaps, therefore, this is a moment to reflect a bit on the foundations of ethics, and on the universal human sense of right and wrong. I'd like to begin with what may be the most famous words of the moral philosopher Immanuel Kant:
"Two things fill the mind with ever new and increasing admiration and awe, the more often and steadily we reflect upon them: The starry heavens above me, and the moral law within me."
I agree! Indeed, it is truly a remarkable gift that we humans possess. As is nicely documented in the Appendix to C.S. Lewis's book "The Abolition of Man", this deep sense of right and wrong has apparently been true of all human cultures and across all epochs in history. Some have called it the Moral Law, others the Law of Human Nature.
We may disagree, of course – in fact, we most certainly will -- on the details of which actions are right and which are wrong. We are, after all, capable at times of unspeakable evil. But interestingly, we humans are quick to make excuses for ourselves and our cultures when we seem to be violating that Moral Law. Yet, the need to make excuses only further documents our conviction that the Law is there, and we are supposed to follow it.
A remarkable aspect of the Law is that it sometimes seems to ask us to practice a form of radical altruism, even to the point of great danger or death to the individual. This goes scandalously against the straightforward expectations of evolution. Consider the example of Wesley Autrey… a construction worker here in New York City who risked his life to save someone he didn't even know. In January 2007, while waiting on a subway platform with his two young daughters, Autrey, who is black, saw a young white man suffer a seizure and fall onto the tracks in front of the oncoming Number One train. In a split second, Autrey jumped down onto the tracks, shoved the young man in between the rails, and threw himself over the young man's body. The train rolled over them both, but they both survived. The call was close enough to leave grease on Autrey's cap, but he still insists he wasn't a hero, telling The New York Times, "I just saw someone who needed help. I did what I felt was right."
Application of Ethics to Science: The Genomics Example
Ethical decision making in science may not always carry the same sense of drama – but the consequences of making the right choices can be profound. And while scientists may debate the origins of this human knowledge of right and wrong, they generally do not disagree about the calling to behave in the best interests of others, and not just of self.
Science has not always demonstrated that calling by thoughtful actions, however. Too often the ethical implications of a scientific program have not been considered up front, be it the so-called science of eugenics – largely developed in the US in the early 20th Century, but later applied in the most horrific ways in Nazi Germany…or the splitting of the atom, an "achievement" that's left our world in a constant state of existential anxiety.
I'm proud to say the international Human Genome Project, which I had the privilege to lead, tried to be different. From its inception in 1990 to this day, this historic effort has made a point of taking very seriously its potential ethical, legal, and social implications, known as "ELSI" for short. We created an environment in which bioethics was not shoved off into a corner, or considered something to think about later. It was part and parcel of the genomics revolution. One of the most important originators of that effort is here this evening – Dr. Nancy Wexler. It's been estimated that support for ELSI research in the genome arena represents the largest amount of money ever devoted to bioethics research.
Did this proactive approach work? Well, it remains a work in progress. But there were real consequences. I recall a moment where the actual sequencing of the human genome was about to get seriously underway, but it turned out that the library of large DNA fragments that had the most appealing scientific properties had been derived from a blood sample taken from a postdoc in one of the genome labs. Everyone knew who that was. An intense discussion ensued – and though it cost the project several months of delay, samples for the project were then obtained in the right way – from a series of about a hundred volunteers who signed informed consent. After the DNA was prepared, the labels were taken off, and only a few of the samples were used. To this day, no one knows who were the actual donors for the reference genome sequence – and that is as it should be. Another important decision with major ethical consequences was that the best interests of humanity would be best served by making the human genome sequence data immediately available, without patent claims, every 24 hours. I believe the ethical framework of the Human Genome Project infused the participants with a special perspective.
In at least one important instance, a profoundly important public benefit resulted from this focus on ethics: the enactment in the US of the Genetic Information Nondiscrimination Act, or GINA, in 2008. Hailed as "the first major new civil rights bill of the new century" by the late Senator Edward Kennedy, GINA is a federal law that protects people from discrimination by employers and health insurers on the basis of their genetic information.
So, what can science as a whole learn from this example? Well, the first lesson is that if researchers want ethics to influence public policy, we need to articulate fundamental moral principles. In the case of GINA, our principle was very straightforward… you didn't pick your DNA, so it shouldn't be used against you. The GINA example also illustrates the importance of engaging the public; the value of coalition building; and the need to separate real ethical concerns from far-out, hypothetical "dangers" that are at best distracting and, at worst, disqualifying.
But as we rapidly approach the era when it will be possible to sequence an entire human genome for a thousand dollars or less, there remain many unresolved questions. Some of the most critical are highlighted in a new report by the Presidential Commission for the Study of Bioethical Issues, just issued last week. They include:
- The need to protect privacy
- The risk of unauthorized or surreptitious use
- The debate about whether or not to return incidental findings
Broader Ethical Concerns
Let me not be too narrowly focused here. The issue of ethics in scientific research certainly didn't begin… and certainly will not end… with genomics.
Take the thorny matter of the oversight of research involving human subjects. I think both researchers and patients would agree that the current system is broken. Scientists can tell you that it often takes an inordinate amount of time to get even minimal-risk projects through overworked Institutional Review Boards… while even the most motivated patients can be put off by 20-page consent forms and all the other paperwork involved in enrolling in research protocols. The current principles, set forth in the so-called Belmont Report, date back to 1978, and the current set of implementing rules are 20 years old. So, there's an urgent need for an updated approach, and I can tell you that problem is being actively worked on by the Administration.
Ethical Obligation to Heal
But before I close, let me emphasize the critical need to assess both the risks of scientific advances, and the benefits. As the achievements of the previous winners of this award so clearly demonstrate, biomedical research rests on a unique foundation of ethical responsibility – both to do no harm and to seek ways to alleviate human suffering. Doing nothing when we have the opportunity to find new treatments and cures is the most unethical of all choices.
In recent years, rapid advances in our understanding of the molecular basis of health and disease have made our collective responsibility to speed the development of clinical benefit even greater. We know the cause of 4700 diseases, but only 250 have any treatment available – even worse, in many areas, the trajectory for therapeutic development has been flat or even going the wrong way. While desperate individuals and families are waiting, we can't wait 14 years and spend $2 billion for each new treatment! That pressing need makes it essential to experiment with new partnerships among academia, government, and industry. NIH is vigorously exploring those new approaches. Yes, many such partnerships may fail. But we cannot just keep pressing on with the same models as in the past. To do so, abandons our ethical responsibility.
In closing, I'd like to remind you that science is the pursuit of new knowledge—a pursuit made possible in large part by advances in technology. Yet, as science moves forward, sometimes at a pace that surprises even the most enthusiastic among us, we would all do well to remember a couple of maxims:
- The first is: Knowledge itself does not have moral content – it's how we decide to use it.
- And the second: Our technology must never exceed our humanity.
Sounds simple enough, but I guarantee you that we will be challenged at every turn to live up to these maxims. Still, I'm an optimist. I believe that together we can harness the tools of science to create a better future for all of the world's peoples. I know there will be cynics, but I am not among them, and I call upon each of you to embrace this tremendous challenge and join me on the journey ahead.
And, to help speed us on our way, let me leave you with a special blessing, often attributed to the Franciscans, but actually composed by Sister Ruth Fox, a Benedictine nun. This fourfold blessing seems to me a worthy reflection on the "Pro Bono Humanum" theme that we celebrate this evening:
"May God bless you with discomfort at easy answers, half truths, and superficial relationships, so that you may live deep within your heart.
"May God bless you with anger at injustice, oppression, and exploitation of people, so that you may work for justice, freedom and peace.
"May God bless you with tears to shed for those who suffer from pain, rejection, starvation and war, so that you may reach out your hand to comfort them and to turn their pain into joy.
And may God bless you with enough foolishness to believe that you can make a difference in this world, so that you can do what others claim cannot be done."
Thank you for listening.