In Memoriam:

Charles McCarthy, PhD

A  giant of the research ethics field and a beloved member of the PRIM&R family.

A Tribute to "Charlie"

The research ethics community mourns the loss of Charles R. McCarthy, PhD, a giant of the research ethics field and a beloved member of the PRIM&R family, who passed away on October 14, 2022, at the age of 96.

”Charlie,” as he was known to all who were lucky enough to know and work with him, served on the PRIM&R Board of Directors from 1993 to 2011. He was awarded PRIM&R’s Lifetime Achievement Award for Excellence in Research Ethics in 2003, became a Distinguished Leader of PRIM&R in 2012, and was recognized as a Pillar of PRIM&R in 2021.  

Charlie was a true founding father of the field of human research protections. While at the NIH in the early 1970s, Charlie helped to draft the National Research Act for the US Congress. Enacted in 1974, the National Research Act created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and required that Department of Health Education and Welfare (DHEW) create human subjects protection regulations. Charlie served as the DHEW liaison to the National Commission, which went on to create the Belmont Report, and drafted for DHEW the first set of regulations for the protection of human subjects of research. 

Charlie was subsequently appointed director of the NIH’s Office for the Protection from Research Risks (OPRR), the predecessor office to the Office for Human Research Protections (OHRP) and the Office of Laboratory Animal Welfare (OLAW). Charlie was OPRR’s longest-serving director, holding the role during the critical period from 1977 to 1993. In that role, he was charged with protecting the rights of human subjects and promoting the welfare of laboratory animals.  

During that time, Charlie served as Chair of the Committee to revise the HHS Regulations for the Protection of Human Subjects, published in 1981 and later adopted as the Common Rule. From 1983 to 1985, he served as Chairman of the Committee to create the PHS Policy for the Care and Use of Laboratory Animals, published in 1985.

In 1992, Charlie retired from government service, but his involvement with research  ethics continued. Until 2016 he worked part-time, contributing his vast store of knowledge to Virginia Commonwealth University’s newly created Office of Education and Compliance Oversight.  

Across his long and distinguished career, Charlie authored many publications, served on and led key committees on research and its oversight, lectured widely, and was a mentor to many. His impact on the field of research ethics and, in particular, human subjects protections, was immense. He was also a warm, gracious, fair, wise, and delightful human being. He will be tremendously missed, but his legacy lives on in the work of so many.  

PRIM&R is honored to share some of the remarkable People and Perspective Sessions that illustrate Charlie’s wide-ranging impact on the field.   

You can read Charlie’s obituary here

Below, we have gathered words from a few members of the PRIM&R community who knew Charlie well. 
 


Charles R. McCarthy and Biomedical Research: A Brief Review

October 24, 2022

Charles Raymond McCarthy, PhD, died on October 14th, 2022, at the age of 96 in Richmond, Virginia.

Dr. McCarthy’s advanced training in philosophy and political science at the University of Toronto prepared him well for the challenges he would face during his 21 years of service within the U.S. federal government.

Leaving academia in the summer of 1971, Dr. McCarthy began a second career at the National Institutes of Health (NIH) – as a program analyst in the Division of Legislative Analysis (DLA) within the Office of the NIH Director. During his first year at NIH, he was also appointed Executive Secretary of the NIH Director's Advisory Committee. In 1975 he was promoted to the role of Director in DLA’s Legislative Development Branch. At the DLA his primary responsibility was to provide a constant flow of accurate, relevant information between NIH and the U.S. Congress.

Between February and July 1973 Senator Edward M. Kennedy held highly publicized hearings on research involving human subjects. NIH and the Department of Health, Education and Welfare (DHEW) were clearly under pressure to update and upgrade their current policies on such research. In 1973 and 1974 Dr. McCarthy worked with two colleagues to draft the first set of DHEW regulations governing the rights and welfare of human research subjects. The final version of these regulations was published in the Federal Register on May 30th, 1974. In a parallel development, Representative Paul Rogers and Senator Kennedy introduced, and the Congress enacted, the first law for the protection of human research subjects. Dr. McCarthy drafted the portion of the law that created and described the mission of a federal advisory group – the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (the Commission).

The Commission began work in 1974 and issued 17 reports before it concluded its activities in 1978. Dr. McCarthy served as DHEW liaison to the Commission. In that role he reported actions and recommendations of the Commission to the Secretary, DHEW, and to agency and institute leaders within the Department.

In 1978 Dr. McCarthy was appointed Director of the NIH Office for Protection from Research Risks (OPRR). In that role he assumed responsibility for implementing the federal regulations that were designed to protect the rights and welfare of human research subjects. He also accepted responsibility for implementing federal guidelines for the care and use of laboratory animals. Virtually all research conducted in U.S. academic institutions is subject to later versions of these regulations and guidelines.

Between 1978 and 1980 Dr. McCarthy took a leave of absence from OPRR to fulfill another important role for the U.S. federal government. In 1978 DHEW Secretary Joseph Califano appointed Dr. McCarthy as Staff Director for the Secretary's Ethics Advisory Board (EAB). After intensive study the Board published its 800+-page Report on Human In Vitro Fertilization and Embryo Transfer in May 1979. The Board’s report proposed ethical guidelines for the use of in vitro fertilization in both the laboratory and the clinic.

In 1980 Dr. McCarthy resumed his role as Director of OPRR. Between 1980 and 1992 he worked tirelessly to develop the “Common Rule” – a uniform set of regulations for protecting human research subjects. He also helped to revise and promulgate a uniform set of rules for the protection of animals in biomedical and behavioral research.

While his principal roles were administrative, Dr. McCarthy also made a substantial contribution to the literature on research ethics, publishing more than 30 articles in journals, books, and encyclopedias. 

Dr. McCarthy retired from government service in 1992. Thereafter, as a Senior Research Fellow at Georgetown’s Kennedy Institute of Ethics, he co-taught ethics courses for students at the Georgetown University Medical School. 

Charles and Estelle McCarthy moved to Richmond, VA, in the mid-1990s. However, Dr. McCarthy’s involvement with research ethics was not yet finished. He joined the Richmond Bioethics Consortium, a grass-roots organization that sought to provide education and consultation services. Between 2000 and 2016 Dr. McCarthy also contributed his considerable store of knowledge to Virginia Commonwealth University (VCU). From 2003 on, he worked closely with Monika S. Markowitz, PhD, Director of VCU’s newly created Office of Education and Compliance Oversight.

During his distinguished career, Dr. McCarthy received many honors. These included Distinguished Service Awards, bestowed by two Secretaries of Health and Human Services, and a Lifetime Achievement Award from the nonprofit organization Public Responsibility in Medicine and Research (PRIM&R).

 Daniel McCarthy and LeRoy Walters; based in part on reminiscences of Charles McCarthy.
 


In 1984, when, on LeRoy Walters’ recommendation, Charlie welcomed me into OPRR as its first-ever graduate student program analyst. It opened a door to the world of research ethics that has never closed almost four decades later.

It is hard to believe I spent only a summer with Charlie, Charles McKay, Bill Dommel, Carol Wigglesworth, Darlene Ross, and the other OPRR staff in Bldg. 31 on the NIH campus. It felt like a year’s worth of experience packed into two months. Coming to work every day, and walking across the magnificent NIH campus was like being in Disneyland for science. It would not be the only time in my career that I felt the imposter syndrome, but it was quite profound to be learning about the world of research ethics from inside the tent through the eyes of a founder – let’s just say that I hoped I wouldn’t be exposed too quickly. Yet as all who knew Charlie can attest, I had nothing to worry about: he took me under his wing and mentored, explained, taught, and advised with the wisdom of a sage and the compassion of a caring uncle.

Among my responsibilities at OPRR was to review the literature on research ethics, including the gaps in relevant guidelines post-Belmont, as well as what was going on internationally. For my sins, he asked me to design and run an OPRR educational workshops on behavioral research ethics, a topic that was becoming part of the regular curriculum of institutions and researchers who wanted to know more than what the regs required but why. I was petrified. But the workshop worked out, and I was starting to wise up to McCarthy’s masterful mentoring. He was teaching me something that I didn’t appreciate until much later: that theory is best understood through application and vice versa. I can still recall and recite arcane sub-sections of 45CFR46 with the ease of my first home telephone number. (Such a nerd). I proudly list my two-month stint at OPRR on my CV because I am honored to be a part of its legacy and what it (and Charlie) taught me. But he wasn’t done with me, or me with him.

Charlie was the perfect addition to my PhD dissertation committee at Georgetown, joining the research ethics supergroup of LeRoy Walters, Tom Beauchamp, and Bernard Dickens, one of Canada’s foremost scholars. As their chapter comments flew back and forth amongst themselves like a tennis ball at the US Open, I was simply hoping my work on the concepts of harm and risk as applied to IRB decisions would be of some generalizable interest. While LeRoy and Tom’s rigorous comments exposed areas to further clarify on the theory, Charlie’s patient critiques of the application of my argument to IRBs were just as penetrating. The dissertation also attracted the attention of Bob Levine, who, at several PRIM& R meetings, pretended to be angry with me and feigned disappointment that he wasn’t on my committee. (He did this for years). I suspect it was in part that he wanted to hang out with the cool research ethics gang and because he wanted to continue some longstanding discussions about risk and benefit with Tom and Charlie. Given how much I helped from reading Bob’s Ethics and Regulation of Human Research, he may also have wanted a chance to correct any of my misinterpretations of his work, though he was kind enough to publish a short piece from my PhD in IRB).

My career would have been very different if it were not for Charlie and many others. I doubt I would have been offered the position of Research Ethics Officer at the American Psychological Association, where I got to work with Barbara Stanley, Gary Melton and Joan Sieber. And I am quite certain that having OPRR on my CV and a letter of support from Charlie helped convince NHGRI to hire me as ELSI Program Director after Eric Juengst stepped down and to assuage any concerns by DHHS and OSTP about appointing me Executive Director of the National Bioethics Advisory Commission. Indeed, in a welcome moment of reciprocal appreciation, it was Charlie whom we invited to NBAC with John Fletcher to launch the great debate about the proper location of OPRR. Their masterful contretemps are contained in the appendixes of NBAC’s last major report on human research protections. (Alex Capron was there, he can confirm). I recall being invited back to Canada by the Medical Research Council, which had read the NBAC report and was considering the use of “assurances” in Canada. Seeking Charlie’s advice and trying to channel it for my presentation in Ottawa, I think I said something like, ‘the assurance process arose from within a specific political and social context in the US, so it can’t simply be imported whole cloth without taking into account the context in which it will be applied; Canada should consider creating its own version’. It felt Charlie-esque.

By then, Charlie was close to retiring, and to my utter shock, he asked me to consider applying for his job as OPRR Director. I was equal parts gobsmacked and honored by the prospect. But I knew enough that I was not qualified or ready. Whether Charlie knew this or not, he never let on. But the mere mention of the possibility meant more than he will ever know. Of course, Gary Ellis was appointed OPRR Director, who had far more experience and knowledge than me, and the rest of the OPRR/OHRP history continued on into the present day involving many on this email.

I do have one lasting memory of Charlie being disappointed, which was rare since he was always a glass-half-full guy. As he was planning his retirement from OPRR, one of his projects was to write a book about his experience in the regulatory system he had played such a leadership role in creating. He found a somewhat obscure grant program within the National Library of Medicine that seemed a perfect match and asked me to join him as his research assistant for what he imagined would be an exercise in going through the boxes of documents and notes he kept in his basement. He was an early advocate of using the grey literature and personal notes he had kept from his many adventures with HEW, NIH, DHHS, and others. He knew, as we all do that one cannot do justice to a topic like the history of research regulations by looking only at the products (e.g., the final published regulation or guideline) but must include looking at the process of coming to those conclusions and the people who were involved. 

Incredibly, our grant was not even scored, let alone funded. Our suspicion was that NLM feared embarrassment from some long-ago meeting notes recalled by Charlie; or, worse, that reviewers did not see any merit. We’ll never know. He was disappointed, but if he was deeply upset by it, he never let it show. Instead, he went on to write many papers (we wrote several chapters together), which distilled some of what was in the boxes. He also taught, mentored, advised, and left many hours of video interviews so that generations can see the twinkle, hear that friendly voice, and learn some history, which is a beautiful legacy on its own.

Joan and others have commented on his faith and how some of its principles could be seen in his work throughout his career. I will accept that assessment from those who are more familiar with Paulist theology than me. What I can say is that Charlie knew a lot about love and justice. The stories of his meeting Estelle, and the way they were together, was a love story worthy of a movie. As for justice, he was a warrior before it was cool. Without elevating the regs to an unattainable pantheon, I believe he saw them as a reflection of a type of procedural justice – where setting standards, criteria, and benchmarks for ethical behavior in research that all can attain, was the regulatory equivalent of fairness: to researchers, to institutions, and to research participants. Others have written about his good works in Ireland and elsewhere, confirming that he lived the principle as a virtue even more than as a guidance standard. (And I haven’t even mentioned his work on animal research ethics…).

Charlie told me he kept a list of what he called ‘gracious’ people. It didn’t require deep theological understanding or a dictionary to know what he meant. There are many people on this email I believe, were on that list and many who are gone that were posthumously included. You’ll forgive me if I include Charlie at or near the top himself. He not only gave rise to a regulatory system but also to a community of people with shared commitments.

Rest, Charlie, rest in peace. Your work will go on

Eric Meslin
 


Although I had known that Charlie was slowly declining and that this day would therefore come, it still feels unreal. He seemed ageless, and his spirit certainly was. There’s no way, though, to prepare for the loss of such a towering giant who combined sound judgment, intellectual heft, vision, unfailing kindness, humor, and a “Receiving the Day”* focus with a depth of wisdom, sterling principles, and compassion. Charlie was a practitioner of acceptance, gratitude, and understanding and made everyone lucky enough to be in his orbit feel as though the friendship was going to be “good to the last drop,” just like a cup of Maxwell House coffee. 

I have always credited Charlie with giving PRIM&R the reflected visibility and credibility that the then fledging organization needed to survive. PRIM&R was founded in 1974, only two years after the story of the USPHS Study of Untreated Syphilis (I learned early on in my work with PRIM&R that the venerable city of Tuskegee does not want to be the shorthand name for that tragically unethical research) was uncovered. We held our first conference in 1977, and I invited Don Chalkley, the director of the newly created Office for Protection from Research Risks (OPRR), to join the faculty. He graciously participated but had to leave the post in 1978 due to health problems. Charlie was named his successor.

Charlie had been at NIH since 1972 and had drafted HHS’s (then called HEW) response to the outcry that erupted after the exposé of the USPHS story. He also played a key role in formulating the responsibilities of the National Commission and the subsequent regulations. Charlie’s appointment as the OPRR director changed the course of how research was conducted in this country, and he became one of the moral centers of the movement to protect research subjects. He developed “assurances,” which, it was hoped, would enshrine the Belmont principles at the institutional level. Assurances were his carrot; he never used a stick because he believed that if you expected the best of people, you’d get their best, and if you expected the worst, you’d get that instead.

Charlie immediately became an active both faculty member and student at PRIM&R’s conferences. He authorized and participated in numerous synergistic partnerships with PRIM&R…co-sponsored workshops held around the country, co-authored handbooks, and let contracts for PRIM&R to conduct educational activities with OPRR’s—and then OHRP’s (Office for Human Research Protections)—participation and imprimatur outside the country. I believed—and often told Charlie—that he and his colleagues were the main attraction at PRIM&R meetings. He always told me in response—albeit with that Irish twinkle in his eyes—that I should then be the one to carry his bloodied body out on his shield when the meetings were over. The PRIM&R/OPRR/OHRP partnership is unique among relationships between regulators and the community of regulated institutions and individuals. We shared a common goal, and each party knew that an adversarial relationship would make it harder—if not impossible—to be effective.

Charlie did absorb lot of criticism back in the days when the draft regulations and Common Rule, etc. were first circulated, but he was always respectful to and patient with those who came at him with brickbats. In fact, Herman Wigodsky, “Wig,” was one of Charlie’s most vocal critics, and yet they became the best of friends. Charlie was fair, nonjudgmental, and a good listener…he instinctively knew that in order to earn respect, one has to give it. He also knew that reasonable people can disagree, and his many professional successes stemmed from that humility and openness. 

Charlie was a humanist. He was proud of the fact that he had been a Paulist Father, a branch of Catholicism whose mission includes ecumenicism, inclusivity, and community. When I commented on his positive attitude and ever-present smile, Charlie told me those were among the numerous Paulist tenets to which he would always remain devoted. He loved coming to Boston for meetings because that’s where he had been a Paulist Father, and he regaled me with some very funny, as well as some very serious stories about those days. 

Charlie especially loved coming to Boston for PRIM&R’s animal protection conferences, which were held in March and sometimes coincided with the celebration of St. Patrick’s Day. We spent at least a few such evenings in a famous Irish pub near Faneuil Hall, singing the standards of his motherland, and he was in his element. It was a joy to see and hear. 

The Paulist belief in interfaith education led to Charlie’s attending a conference where he met Estelle (AKA, the “Big E”) Rountree, a preeminent Presbyterian and interfaith educator who he married in 1971. Estelle and Charlie had a love affair for the ages, and their devotion was an inspiration. Estelle was from Alabama, and when she said Charlie’s name, her southern accent made it sound like a song. I can still hear it. Their respective religious backgrounds led to their involvement in the Northern Ireland peace process. After he returned from those trips, Charlie’s stories made me feel that reconciliation could be achieved because Estelle and Charlie were hopeful…again, a Paulist virtue.

Charlie and Estelle, while in their seventies, I believe, took in Estelle’s nephew for several years. I asked Charlie how it felt to be parenting a teenager. With characteristic calm, he told me that you have to treat every child based on his or her personality. He had been one of eight children and told me that his parents treated each one differently, especially when misbehavior was involved. One brother had to be taken to the woodshed, while another had to have his allowance docked. One sister needed to be sent to her room, while another received a good talking to, etc. I asked what method his parents employed when he was naughty (although it was almost unthinkable that he ever was), and he told me that they only had to give him a quick look of disappointment and he’d never again engage in the offending behavior. That must have been where Charlie learned to treat each of us based on our individual characteristics and needs. There was gentleness, rationality, and a devotion to fairness and civility in his DNA.

Finally, I’ll never forget that Irish twinkle and sense of humor: At one Board meeting, we celebrated Charlie’s and Paula Knudson’s birthdays. They were PRIM&R royalty and the venerable senior “statespeople” of the organization, but other than the standard cake and serenade, I had no idea how to honor them appropriately. I decided to make crowns but ran out of time, so I went to Burger King and wangled two of theirs. Charlie was delighted by his coronation, and we all had a good laugh. He was not above silliness and never lost “the common touch.”

What a loss, but oh, what a life! Charlie was humble, hilarious, and a “human being,” i.e., a mensch. You don’t have to be Jewish to be a mensch, and Charlie was a real mensch. He lived a long, purpose-filled, loving life of service and relevance. He was a treasured leader and colleague. He had many friends, and I was privileged to be among them. He was my teacher, friend, favorite raconteur, and my role model for how I wanted to live my life. I owe him a huge debt. Thank you, Charlie. 

With gratitude for the life of Charlie McCarthy and to those who cared for him in his later years, including Monika, Leroy, and the doting staff at Canterbury. Rest in Peace, Charlie, and may Estelle’s melodic southern accent serenade you for all time.

My grandfather’s favorite poem is below. I don’t know many people who have lived up to its impossibly high bar, but Charlie did. For that and many other reasons, his memory is and will remain a blessing.
 

If— 

Rudyard Kipling - 1865-1936 

If you can keep your head when all about you 
   Are losing theirs and blaming it on you; 
If you can trust yourself when all men doubt you, 
   But make allowance for their doubting too; 
If you can wait and not be tired by waiting, 
   Or, being lied about, don’t deal in lies, 
Or, being hated, don’t give way to hating, 
   And yet don’t look too good, nor talk too wise; 

If you can dream—and not make dreams your master; 
   If you can think—and not make thoughts your aim; 
If you can meet with triumph and disaster 
   And treat those two impostors just the same; 
If you can bear to hear the truth you’ve spoken 
   Twisted by knaves to make a trap for fools, 
Or watch the things you gave your life to broken, 
   And stoop and build ’em up with wornout tools; 

If you can make one heap of all your winnings 
   And risk it on one turn of pitch-and-toss, 
And lose, and start again at your beginnings 
   And never breathe a word about your loss; 
If you can force your heart and nerve and sinew 
   To serve your turn long after they are gone, 
And so hold on when there is nothing in you 
   Except the Will which says to them: “Hold on”; 

If you can talk with crowds and keep your virtue, 
   Or walk with kings—nor lose the common touch; 
If neither foes nor loving friends can hurt you; 
   If all men count with you, but none too much; 
If you can fill the unforgiving minute 
With sixty seconds’ worth of distance run— 
   Yours is the Earth and everything that’s in it, 
And—which is more—you’ll be a Man, my son. 

* Charlie gave me a copy of Receiving the Day (an ecumenical book by Dorothy Bass) at least 20 years ago. It taught me a lot about the values that guided his and Estelle‘s lives and helped me clarify how I’d like to live mine. 

Joan Rachlin

P.S. Did I mention that Charlie taught me, by example, that brevity is vastly overrated.;-)
 


I have only a very modest story compared to the rest, but I think it does speak to the depth of Charlie’s influence in our field.

In the very early 1990s I took a research ethics course at the University of Toronto, a course I needed to qualify for admission to the new M.Sc. program in Bioethics the following year. I had a long and torturous path to my academic career, so I was actually a few months older than my professor.

That professor was Eric Meslin (I have taken the liberty of copying him here—hope that’s OK). Eric’s course was probably the most influential course I have ever taken. It was a proper masterclass taking us deep into incredible cases and linking them to the development of thinking and policy, and regulation. It was a transformative experience for me. Eric had excellent content about Canada and Canadian policy development, but the course took us deep inside the evolution of research ethics policy in the United States. And, since he had recently been repatriated to Toronto from Georgetown, Eric was able to bring all of these amazing people, whose papers and books we were reading to life. He knew them all. I take it for granted sometimes that I know many of them now myself, but back then, it was genuinely like being guided into a remote and fascinating new world.

In one of his lectures, Eric told us about OPRR and how it was situated within NIH (I could never have dreamed that I would end up there myself one day for one of the greatest experiences of my life) and about its history and significance. And Eric told us about his own experience at OPRR as a Ph.D. student at Georgetown with Charlie McCarthy as his mentor. I don’t remember exactly what he said, but it was very clear that Charlie had an incredible influence on Eric and his career direction. So I inherited a great deal from Charlie’s investments in Eric. Eric eventually became my Masters’ thesis supervisor—and lifelong friend—and over the years, I have gotten to learn more and more about Eric’s affection and respect for Charlie and about Charlie’s out-sized influence on the evolution of the field.

And so, when I eventually met Charlie on the PRIM&R Board, it was a truly beautiful moment of connection for me as a kind of link between my mentor (Eric) and his mentor, Charlie. It felt like a personal “arrival” for me to have the opportunity to serve on such an important body, with such an important and utterly lovely person, with such a meaningful personal connection. Charlie, of course, was delighted when I told him this story—I probably descended on him at a coffee break at one of our meetings in Boston and just launched into my “fan-girl” rant—but he made me feel incredibly welcome then and always.

I’m very grateful to have known Charlie, to have benefitted so much from Eric, his protégée, and to Joan and all of you who made the connection possible and my time on the PRIM&R Board such a joy.

James (Jim) Lavery
 


When the annual meeting was in San Diego - Charlie and I would travel to the old town on Sunday morning to go to mass, followed by a gargantuan Mexican breakfast at a restaurant across the street. While we dined at picnic tables, Charlie would regale me with stories of growing up as well as commentary on that day’s sermon. One of the best stories was how, when he was training to be a priest - he (with a classmate) would put on roman collars and crash Catholic wedding receptions to get a good meal. He said that no bridal party would ever turn away a priest!

I also remember going to a Red Sox game with him - we sat in the grandstand that had about 2 inches of legroom so that people in the row in front of you were almost in your lap. Well, Charlie, a bit hard of hearing, started a loud conversation about embryonic stem cell research and in-vitro fertilization - both of which he supported. His voice got louder and louder as he talked about it. The people in front of us (in our laps) kept turning around, harrumphing, and giving us dirty looks. Any effort on my part to change the conversation and/or decrease the volume was for naught. Finally, the four people sitting in front got up - gave us a sneer, and left, never coming back (despite it being an early inning). Charlie missed the drama - and just celebrated the fact that we could now put our legs on the seats in front of us.  

He is and shall be missed.

Pearl O’Rourke
 


There are so many stories with Charlie. Here are a few

As a new IRB administrator I first learned who Charlie was when I received a letter that we were being investigated by OPRR, and it turned out we did wrong!! Guess who the PI was of that study- It was Pearl O’Rourke. Pearl and I present this research protocol case when we teach research ethics at HMS

One year Charlie and I were flying together from DC, and we had to go right to a Board meeting. I had my car at Logan, and it was raining. We were on the southeast expressway and got hit from behind. Charlie immediately asked me to stop, and he was about to jump out of the car. He insisted I did not get out. If anyone knows the expressway coming out of the tunnel, there is nowhere to stop. After I explained to him there was no way either he or I would get out of the car, we moved along, and luckily the person who hit us followed until it was safe to pull over.

I always told Charlie if I could choose a second father, it would be him. 

He was so much a part of my professional life. He always wanted to hear about everything and had amazing stories. He was one of the wisest people I know. He will be missed!

Susan Z. Kornetsky
 


My lasting memory of Charlie was spending a day with him in Richmond at the facility where he was living.  We decided to meet and spend a little time together because of the People & Perspectives project.  I had not previously spent time with Charlie outside of Board meetings or PRIM&R conferences, and I learned a lot more about Charlie that day than I otherwise would have had a chance to in those other circumstances.  However, for this purpose I reflect on Charlie’s participation in the move to integrate ARENA into PRIM&R.  As you know, this was a difficult transition for many people close to the organization – particularly on the ARENA side – who viewed the move with suspicion.  (Really more like a hostile takeover!)  Charlie agreed to be part of the working group who would guide the transition as a member of the PRIM&R Board.  Charlie was a calming presence who was trusted by all parties as fair and principled.  He was not afraid to be a candid and critical participant in the discussions.  His role in making that transition work cannot be understated.  It is yet another example of the good work did for PRIM&R and the research ethics and IRB professional communities.

David Borasky
 


We will remember him as a wonderful, warm, gracious, and incredibly smart gentleman. His tremendous impact on the field of research ethics and human subject protections will continue to serve us for generations.

Monika S. Markowitz
 


Charlie was simply a lovely human being. He brought joy, love, and laughter along with serious thoughts, elegant sentences, and always the reminder to do “the right thing” - his absolute guiding principle. 

I was privileged to know Charlie for some three decades and to share time with him on the Board, in travel, and many conversations on ethics, the state of the world, and the importance of PRIM&R. I knew then, and I certainly know now what a giant he was in the field we care so much about. His is truly a great loss.   

Paula Knudson
 


I was enormously fond of Charlie and will miss him dearly. He was one of the last of the pioneers of human research protection, and his impact cannot be overstated. Personally, I recall with fondness many discussions about the early days, during which he patiently explained development of the Belmont Report within the barren landscape of human research protection that existed in the shadow of Tuskegee, the Beecher Report, and of course, Nuremberg and Helsinki.

I remain inspired by his deep commitment to the field, remaining active well into his 80’s. One of my favorite memories is one I occasionally recite to others as a testament to an indomitable work ethic. In the early 1970’s Charlie was working so hard that he was frequently sleep-deprived. He once woke up as his plane was landing, then directed a taxi driver to a specific address that the driver did not know. Charlie was a bit impatient (a relative term for the most patient of men) with the driver until he realized that he had managed to sleep through the first stop on a plane that made multiple stops. He had intended to get off the plane in Detroit and landed in Dallas (or something similar)!

Charlie’s was a life well lived, and he will be sorely missed.

May his memory be a blessing.

Walter Straus
 


It has been so wonderful to read all the tributes, to see each of your names appear and to remember what an amazing group of colleagues we all had during the “time of Charlie.” Each of us seems to have a way in which Charlie made us feel special and appreciated. I have so many memories of my own from when I was a young whippersnapper just starting out trying to do empirical research on research ethics all the way through to Charlie’s departure from the PRIM&R board. I’ll share just one memory, the one I hold closest to my heart. During one of our PRIM&R board meetings, I got a message from Charlie asking to meet me in the hotel bar where our board meeting was being held. It was shortly after Charlie’s dear wife, Estelle, died. When we met, Charlie got right to the point. “How did you do it?” he asked. Tears appeared in his eyes, and I understood what he was asking me. “How did you get through it? How did you handle the grief, the loss?” I, too, had lost my spouse. We sat, talked, cried, and held hands. He spoke about how he had watched me navigate the loss of my husband years before and how proud he was of how I handled things and how he thought I had so much strength (I didn’t). This was the first of several of these conversations, and built a bond between us that was strong and unspoken. Thank you all for sharing your memories. It brought back to me this wonderful experience with this amazing man.  

Barbara Stanley