Thursday, December 31, 2009
On the eve of the New Year, I wanted to share with you a story of love, devotion, courage, and character that has inspired and motivated me.
The story actually begins over 30 years ago when, as a young attorney working to improve the health and mental health care for those incarcerated in Massachusetts, I had a client who was experiencing life-threatening kidney problems. Not surprisingly, my efforts to find a doctor who would see an inmate were turning up empty due to the biases confronting most prisoners, no matter how desperate their medical conditions.
I had called at least six specialists in hopes of finding someone who would not hang up as soon as I mentioned the word "prisoner." Both my hopes, and, more importantly, my client’s kidney function, were fading fast. In fairness, treating an inmate is no cakewalk, as armed correctional officers accompany the shackled prisoner to each appointment, and what was formerly a calm medical office is thereby transformed into a makeshift prison.
I then met a young nephrologist named Andy Levey at the Tufts Medical Center and, from our very first conversation, he was kind, helpful, non-judgmental, and unafraid. Andy is a gentle man with a seemingly permanent smile on his face and a heart that could overflow the Grand Canyon. He treated my client over a period of years and became a true hero to both of us.
I had not seen Andy for well over a dozen years, but then saw him again when I took my son, Micah, to his first day of kindergarten in 1993. My anxiety about Micah’s starting school dissolved in a burst of pleasure at seeing Andy, whose son was in the same class. I told Micah that Andy was one of my heroes, and proceeded to explain why. Since that day, Andy, his equally extraordinary wife, Roberta, and son, Isaac, have been friends and neighbors.
Flash forward to 2009 when Roberta, a beloved and respected oncologist, was in need of a new kidney. Andy was not a match for his wife, but, on December 15, he donated his kidney to a "stranger" as part of a three-way swap. If this were a newspaper article instead of a blog, the headline might read "kidney doctor donates kidney."
I have been thinking about Andy and Roberta for the past two weeks, and so rather than write this New Year’s Eve post about something trite or clichéd, I decided to share their story with you, as it is the story of the greatest gift one person can give to another. My words are wholly inadequate, and, it turns out, wholly unnecessary, too, as Andy, Roberta, and Isaac have sent e-mails that tell their own story in their own words.
Upon returning home from the hospital on December 19, Andy wrote that "Roberta and I had a chance to meet one of the two other donor recipient pairs in our exchange. They are both doing well. We also hear that the third pair is doing well. It was awe-inspiring to hear the story of the other Tufts pair that brought them, from completely different backgrounds and medical circumstances, to the same kidney exchange program as us. What a miracle that we could help each other do what we could not do for ourselves! I feel great every time I think about what I’ve had a chance to do. This is a great start to a holiday season for celebrating miracles."
Roberta joined him at home on December 21, and wrote that she feels "triumphant and very optimistic," and that "it is a very special holiday season for us."
Finally, having met Isaac on his first day of kindergarten, I was awed by reading his e-mail, which demonstrated uncommon maturity, sensitivity, and wisdom. He noted that "the world can be a pretty grim place sometimes, but today, three people, including my mom, woke up with kidney failure in their immediate future and went to sleep at night with new kidneys and, hopefully, clear paths where that organ is concerned for decades to come. Three people today committed a deeply selfless act and donated a part of their body for someone they loved. We should all hope that if we are ever called on to make such a sacrifice, we can follow the example of my dad and two other kidney donors. And when we are in need, let’s hope circumstances and the generosity of our friends and family are on our side."
Roberta and Andy are such caring, humble, and brave individuals, and their story is what I am holding on to as we enter the New Year. It's easy to become organ donors (by ensuring that our driver's licenses reflects our wishes; it's not so easy to become a living donor, which is why this story warranted telling), but being there – really being there – for those you love, is not so easy.
I’m going to try, though, and I’m going to think of Andy and Roberta each time I am presented with an opportunity to make both my small, and the larger, world a better place.
Here’s to good health and safety for each of you in 2010 and beyond, and may each of us find the strength, courage, and compassion to give to others in need, whether they be spouses or strangers.
In addition to our regular features, such as Recent Headlines, Government and Legal News, and Public Policy, this issue included…
- Abstract information for the 2010 IACUC Conference;
- A link to the 2009 Workload and Salary Reports (members only);
- Information about PRIM&R’s current Career Center promotion (get $50 off using code NY121450 at checkout);
- A profile of PRIM&R Board Member, Marky Pitts;
- Our final featured talk from PRIM&R Through the Years. This month’s feature is a session titled “Recovering the Ethics of IRB Decision Making,” from the 1996 IRB conference,
Can’t find the Newsletter in your inbox? Check out the Newsletter Archives.
Want to become a PRIM&R member? Learn more.
Wednesday, December 30, 2009
If you attended the conference, please visit www.conferenceproceedings.com/2009AERC.htm and enter your individual code, which you can retrieve using this link. If you need assistance, please e-mail PRIM&R.
If you have questions about the Conference Portal, please contact Shaquanna Philip, program coordinator, by e-mail or by phone at 617.423.4112, ext. 22.
Monday, December 28, 2009
This photo was taken at PRIM&R's 35th Anniversary Birthday Party in Nashville, TN, at the 2009 Advancing Ethical Research Conference. Are you one of the talented, foot-stompin' singers on stage with New South? Let us know!
Even if you weren't able to join us there, though, we want to extend our gratitude to you, our cherished community, for helping us reach this milestone.
Wednesday, December 23, 2009
At the core of PRIM&R’s culture is an unwavering commitment to ensuring that research is ethical and that research subjects are protected. Looking forward to 2010 and beyond, we rededicate ourselves to these basic principles and to the work of advancing ethical research.
We hope you’ll join us in looking back with pride at what has already been accomplished, and in looking forward with energy and renewed purpose to a continuation of our shared work.
Thank you for being part of the PRIM&R community. We are proud to share common cause with so many principled and hard-working individuals.
Wishing you a joyous season and good health in the New Year and always!
Your pals at PRIM&R
Tuesday, December 15, 2009
PRIM&R is now accepting abstracts for the 2010 IACUC Conference Poster Presentations. The goal of the annual poster presentations is to provide a platform for members of the IACUC community to share ideas, information, and practical strategies that solve the many challenges faced by IACUC professionals. A poster presentation is your opportunity to showcase your research or innovative projects to stimulate informal discussion among presenters and conference attendees.
Last year, three of the accepted abstracts were selected for both a poster and oral presentation. These abstracts included:
- Meeting Responsibilities: the Institutional Animal User Education and Training Program at the University of Saskatchewan, which was presented by Amanda Plante, UCACS Education and Training Committee, University of Saskatchewan.
This abstract describes the University of Saskatchewan’s newly implemented training program that “consists of an on-line UCACS animal care course, practical skills training, one-on-one training, documenting education and training, [and] monitoring procedures.” The program was so successful that “effective January 1, 2009, approval of an animal use protocol (new or annual review), by the AREB requires (or is conditional upon) successful completion of the UCACS Animal Care Course by all personnel listed on the protocol, including the principal investigator. Any new personnel added to a currently approved protocol must complete the on-line course before beginning any work with animals[…] Currently, the UCACS Education and Training Committee (ETC) is developing a shortened version of the on-line course that can be completed by licensed veterinarians.” Complete Abstract Available Here
- Random Source (Class B) Dealer Activities: October 31, 2007- November 1, 2008, which was presented by Gary P. Goldberg DVM, DACLAM, USDA/APHIS/Animal Care. This study was implemented in response to an inquiry from the Institute of Laboratory Animal Resources.
“This review included sources of acquisition such as from private individuals, municipal pounds or shelters, and from other licensee or registrants. The disposition of these animals was categorized as to individuals, other licensee/registrants, or to research facilities[...] In order to estimate the teaching use of the random source animals, the records of random source dogs and cats were surveyed for campuses where U.S. Medical Colleges, U.S. Veterinary Colleges, and U.S. Veterinary Technician Schools were located. Complete Abstract Available Here
- MONiTOR: Monitoring Of Novartis’ in vivo Techniques, Operations, & Research, which was presented by David DeOrnellis, BS, RLATg, CPIA and Colleen Cody, BS, Novartis Institutes for BioMedical Research, Inc.
This abstract describes the “dynamic and comprehensive program for monitoring compliance of NIBR Cambridge in vivo research. MONiTOR is unique due to the incorporation of all aspects of in vivo research in its scope, including the conductance of technical animal procedures, the operational aspects of vivarium management, and experimental procedures. MONiTOR is a fully integrated system that recognizes the importance of compliance at all levels of in vivo research in ensuring the welfare of the animals used for research at NIBR Cambridge, from husbandry to research-related procedures.” Complete Abstract Available Here
Have you recently pursued an innovative approach to improving the management, function, and operations of IACUCs? Or, perhaps you have conducted empirical research on research ethics as it relates to the care and use of laboratory animals?
We encourage you to share your ideas and experiences with your colleagues via a programmatic or scientific poster presentation.
Please visit our website for more information, including guidelines, important dates, and frequently asked questions, and to submit your abstract online.
Wednesday, December 9, 2009
PRIM&R was proud to present three awards at the 2009 Advancing Ethical Research Conference in Nashville.
Designed to honor PRIM&R members who have made valuable contributions to the ethical conduct of research and to enhanced compliance with federal regulations, the Distinguished Service Award was presented to Charlotte Coley, MACT, CIP.
Jeffrey Cohen, PhD, CIP received the ARENA Legacy Award, which was established in 2006 to recognize members who have made outstanding contributions to the goals of PRIM&R by significantly promoting the ethical conduct of research through mentoring, teaching, and leadership.
PRIM&R honored Albert R. Jonsen, MA, with the Lifetime Achievement Award for Excellence in Research Ethics, presented to those whose work has been seminal, exemplary, and the embodiment of a commitment to advancing research ethics.
Monday, December 7, 2009
Susan Reverby generously agreed to let us reprint the below Op Ed piece, which was originally published on Race-Talk on December 3, 2009.
"Don’t take the swine flu vaccine. Remember the Tuskegee Experiment Syphilis Vaccine," a recent post on Twitter warns. The message is simple: "Tuskegee," America’s notorious medical research study, is still considered as our own equivalent to Nazi experimentation that links state power to scientific fervor. Nearly forty years after the study ended, the name “Tuskegee” evokes fears of the dangers of government involvement in medical care. But as Congress debates how to provide health coverage for everyone and fear of the swine flu vaccine runs rampant, there is a different critical lesson to take from the infamous medical research project which targeted poor rural African American men and ran unabated for decades.
The accompanying photograph (taken in 1953) shows PHS physicians drawing blood from, not infecting, the Study's unwitting participants.
From 1932 to 1972, the U.S. Public Health Service (PHS) conducted a study on "untreated syphilis in the male Negro" in Macon County, Alabama in and around the city of Tuskegee. 439 African American men with late stage syphilis were selected as research subjects, and 185 without the disease became the study’s control group. A mostly sexually transmitted disease, syphilis left untreated can cause fatal heart and neurological problems. The men thought of themselves as patients obtaining needed medical care for what was known as “bad blood” from the government’s doctors. The PHS physicians never told these men they were actually research subjects being followed in a "no treatment" study.
Instead, the researchers explained that the aspirins, tonics, and diagnostic spinal taps given were "free treatment." In a county with only 16 doctors whose prices the men could rarely afford, a government program of free care enticed them. The study’s nurse kept visiting the men’s homes and helping them to get medical care for other ills. The study’s subjects and controls were also promised money for decent burials in exchange for the use of their bodies for autopsy after their deaths.
The study was not kept secret. Medical articles charting its progress appeared over the decades, while several health professionals questioned the study’s ethics. In 1972 the research experiment came to an end in a storm of media coverage that brought in federal investigators, a Senate hearing, and a subsequent lawsuit against the PHS, the state of Alabama, and many of the doctors involved.
In "Tuskegee’s" wake, major changes in federal rules governing medical research were established, including written informed consent and the creation of institutional review boards to oversee human subject research. The study also created another legacy—it became the metaphor for the distrust of scientific research, the risks of government provision of medical care, and the exploitation of poor patients.
Rumors and myths about what happened continue to circulate in whispers, blogs and media coverage. Most egregious in the face of the need for H1N1 vaccine is the erroneous claim that the government’s doctors intentionally infected the men with syphilis. But no “Tuskegee experiment syphilis vaccine” was ever created; no shots of the bacteria that cause syphilis were put into the men’s veins.
As the Obama administration takes on the huge task of reforming how we organize and pay for health care for all Americans and we line up for our shots, "Tuskegee" can offer another perhaps less obvious, if ironic, lesson. These men living in rural Alabama came forward for treatment not because they were uneducated and easily duped by their government, but because they needed health care for themselves and their families. They, as with increasing numbers of Americans, had no real access to the medical care they required, could not pay for what was available, and had to find it where possible.
Perhaps as the debate over health care reform winds its way through the Congress, a new post on Twitter should read: "Don’t forget the 'Tuskegee' syphilis study. Everyone deserves the right to affordable health care and this is what our government should and must provide."
Susan M. Reverby is the Marion Butler McLean Professor in the History of Ideas and Professor of Women's and Gender Studies at Wellesley College and an historian of American women, medicine and nursing. She became interested in researching the Tuskegee Syphilis Study after seeing a performance of “Miss Evers’ Boys,” the play by David Feldshuh that tells the story of the study from the perspective of its nurse. In 2000, Dr. Reverby edited Tuskegee Truths: Rethinking the Tuskegee Syphilis Study, a book of articles and primary documents on the study. Her new book, Examining Tuskegee: The Infamous Syphilis Study and its Legacy is now available. Please see the following website for more information. http://www.examiningtuskegee.com.
Thursday, December 3, 2009
PRIM&R helps to educate those involved in the administration of human research protection and animal use and welfare programs through two certification programs: Certified Institutional Review Board (IRB) Professional (CIP®) and Certified Professional Institutional Animal Care and Use Committee (IACUC) Administrator (CPIA). These two programs improve the quality of human research protection programs and animal care and use programs by promoting ethical practices and advanced knowledge of regulations.
The CIP and CPIA exams will be offered during the following testing periods:
CIP 2010 Exam Dates
Spring Testing Period
Application deadline: January 15, 2010
Exam dates: March 6 through March 20, 2010
Fall Testing Period
Application deadline: August 1, 2010
Exam dates: September 11 through September 25, 2010
CPIA 2010 Exam Dates
Spring Testing Period
Application deadline: March 1, 2010
Exam dates: April 10 through April 24, 2010
Fall Testing Period
Application deadline: September 1, 2010
Exam dates: October 16 through October 30, 2010
Both exams are administered by the Professional Testing Corporation, and are offered at least twice yearly at testing sites across the U.S. and Canada. Locate the testing center nearest to you. For more information, and to determine if you are eligible to sit for an exam, please visit the CIP or CPIA eligibility pages of our website.