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To be, or not to be …

We as scientist, as healers, have become distracted, divided, and it is easy to feel conquered by the outside forces of the corporate and legal practice of medicine. These forces have their own agenda. They will not lead science the way we should be leading it. We do not need to lose our leadership role in the scientific community. There is no one better to lead than us. We have shown this in the past, and we must not give up this role. No one can take it from us unless we remain silent. We have more educated people, more ways of communicating to share our thoughts and explain our ideas. More than ever, we need to awaken our common sense, debate and find productive approaches to problems facing our world today.

How is it that a Chinese nonphysician scientist who trained in the United States could go back to China and inseminate Chinese women with CRISPR genetically altered human embryos -something that is universally scientifically banned? This has gotten some press, but not nearly what it should have, because the alteration of human evolution should outrage the medical community, especially when done in secret and against all scientific consensus. The ramifications will, I fear, cause polarization for the CRISPR research going forward. There is so much promise with good CRISPR research, but it is easily and very cheaply misused. We need to lead. We need to know the difference. Let us not be afraid to discuss what is the essence of our humanity, what is sacred about evolution, and when life begins.

As a neurologist, I have been impressed by the example of a similar dilemma in our medical profession’s history in the 1960s. With the advent of new technology and respirators, patients could be kept alive, but the quality of that “life” was in question. There also was the question of organs for transplantation. In 1968, the Ad Hoc Committee of the Harvard Medical School convened to examine the definition of “brain death.” They listed two reasons why there was a need for a definition: 1) that improvements in resuscitative and supportive measures led to increased efforts to save those who are desperately injured, and whose heart continues to beat but whose brain was irreversibly damaged; 2) obsolete criteria for the definition of death leading to controversy in obtaining organs for transplantation. The resulting Brain Death Criteria was generally accepted by the medical community. However, the concept of declaring a patient dead whose heart was still beating, even if artificially, was foreign to lay society. Therefore, in 1981, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research was asked to consider whether death of the brain is indeed death of the person. This committee was composed of lawyers, philosophers, ethicists, religious leaders and physicians. After extensive review, the commission concluded that brain death should be endorsed as legal death and produced the Uniform Determination of Death Act (UDDA).

In 1995, the American Academy of Neurology (AAN) produced guidelines on brain death determination in adults. These were updated in 2010 and endorsed by the Neurocritical care Society and Child Neurological Society, the Radiological Society of North America and the American College of Radiology.

The American Academy of Pediatric Neurology (AAP) also produced similar but slightly different guidelines in 1987, which were updated in 2011.

Meanwhile, in 2008, the President’s Council on Bioethics re-evaluated the validity of the biological and philosophical basis for brain death.

Defining the essence of life and death is not easy. In 2016, the AAN Ethics, Law and Humanities Committee convened a multi-society quality improvement summit to re-evaluate aspects of brain death determination that were still contributing to lawsuits and misunderstandings. In summary, they re-affirmed the validity of the AAN guidelines to determine brain death in adults, discussed systems to ensure that brain death determination was consistent and accurate, reviewed strategies to respond to objections to the criteria of brain death and outlined goals to improve public trust in brain death determination.

The brain death criteria have been slightly modified but essentially hold true to the tenets of the original 1968 Harvard Ad Hoc Committee. Brain death is legally accepted as death in every state in the United States, but the language of states’ laws on determination of brain death is not uniform. In addition, brain death is accepted as criteria for death in more than 80 countries. I admire my colleagues’ tenacity to address this difficult scientific and medical problem with philosophical, ethical, legal and religious overtones, but keeping the focus on the science and the medicine. They were able to evaluate and re-evaluate this issue objectively, and welcome input from philosophers, ethicists, legal and religious leaders without losing sight of their role as the scientists in the room.

It is incumbent upon us, leaders in the medical profession, to initiate and promote the same multidisciplinary approach to the burst of technology and scientific abilities that we have available today, such as CRISPR, “embryoids,” partly human chimeras, etc. We must not be afraid to ask the scientific question: When does human life begin? What defines human life? Initially, as a biochemistry/biophysics major with a minor in biomedical ethics, then a physician, then neurologist, then clinical neurophysiologist, I have revisited this question many times. Each time, the scientific logical conclusion is the same. If brain death defines human death, which I believe it does, and the scientific evidence has been well-vetted, then brain life should define human life. Please consider this logic of science and medical ethics.

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