Confessions of A Wannabe Personal Historian… CONNECTIONS MATTER!

Posted by Joan Rachlin, executive director

"Connection," that "what-does-it-really-mean" word. I am a seeker and supporter of connections, and would like to share with you a few thoughts on this avocation of mine.

By day, I masquerade as PRIM&R’s executive director, but by night I morph into an inveterate collector of other people's stories. "Does this," you might ask, "have anything to do with research ethics or protecting human subjects?" Well, I guess it depends who you ask...I would argue that it does, at least in the sense that everything is connected.

For starters, listening—really listening—to those in our personal or professional lives is a sign of respect, which is, after all, the first Belmont principle. Secondly, respectfully listening to someone helps breed trust, which is an essential ingredient of all strong and ethically-rooted relationships. Thirdly, learning more about someone and their stories can breed empathy, which in turn leads to greater caring and compassion. In today’s fast-paced healthcare environment, most researchers and/or clinicians don’t have time to thoughtfully listen to patients and/or subjects. Without listening, though, it’s hard to develop meaningful connections.

In some sub-specialties, there’s not even an opportunity to listen, e.g., pathologists and most radiologists never even meet their patients. Hungry for a connection with the "folks behind the films," one radiology resident designed a study in which he attached photographs of the patients to their MRI, CT, and other films. His study showed that radiologists' reports are much more detailed and comprehensive when they have photos of the patients in front of them as they read the films. This research was described in a story in the New York Times and concluded that the radiologists in the study, most of whom were disconnected from real, live patients, felt more like doctors when they had a photo in front of them. They reported a sense of connection with their patients and further reported that this connection improved the quality and focus of their work.

Might there be a parallel between the radiologist’s quest and the work of the IRB? Few IRBs professionals have the chance to meet research subjects, although there might be an occasional subject sitting on your committee as the non-scientific member. But have you ever sat, really sat, and listened to first-hand accounts of their stories? Have you ever had the luxury of establishing the kinds of connections with subjects that have made you see things differently? Maybe IRBs should have photos of some prospective subjects appended to the respective protocol so that they, too, have a sense of the "people behind the protocol?"

Photos are but one way to create connections. A recent feature from one of my favorite NPR programs, Story Corps, forced me to pull my car over, as I could no longer safely drive through my tears. The story centered on Hawaii-native Alan Hoe, whose son was killed in Iraq four years ago. Mr. Hoe decided to spend Memorial Day at the Vietnam Memorial in Washington, D.C. and brought some Hawaiian leis with him. While there, he met the nurse who tried to save his son's life and the connection that arose between them was beyond powerful. Have a look or listen, and think about what would have been lost if the connection in this story had not been made.

PRIM&R is blessed by having deep and wide connections with many people in our community, and we urge those of you who would like to be more connected to PRIM&R, to e-mail us so that we can figure out ways in which that might happen.

I'd also like to hear what the word "connection" means to you. Are you doing anything to build or strengthen the connections in your lives? Have you had encounters with research subjects or their families that shook your foundation, even a little? If so, please share some of your "connection" stories with our members via the "comments" section on this blog. Thanks, and have a good weekend!

Not your everyday lost and found

Posted by Catherine Rogers, marketing coordinator

As our three planning committees continue to develop content for the 2009 Advancing Ethical Research Conference, the theme, privacy, continually arises as a touchstone for the present—and future—of research.

But you don’t have to be involved in research ethics to be exposed to the questions swirling around these topics. Yesterday, the Boston Globe reported that the medical records of 66 patients from Massachusetts General Hospital were left on a subway train in March. The group members, many of whom are HIV-positive, claim that their Social Security numbers, doctors, diagnoses, and billing details were exposed by an employee who had taken the records home one weekend, only to lose them on her Monday-morning commute. While four have decided to sue the hospital, the remaining dozens have yet to decide their course of action.

In addition to the stress the personal security breach caused, the issue of medical privacy is at the forefront of the plaintiffs’ claim. While the stigma of being HIV-positive has retreated from the don’t-ask-don’t-tell attitude, there’s still a heightened level of privacy when it comes to the disease. Does that mean that this group is entitled to more damages than, say, if they were instead diagnosed with cancer? What if the disease was more sensational? If it were instances of swine flu attached to medical histories and identifying factors, how might we have reacted differently? Furthermore, if control is an issue, wouldn’t this be one argument for digitizing medical records?

I’m no expert here, but having been exposed to the inner workings of our planning committees, where I hear people debate the level of priority privacy should have, and that there are different views of privacy among different generations of people, I find that I’m more sensitive to these questions. I’d love to continue this discussion, so please leave a comment below to share your insight.

IBC Conference: June 24-26

Collaboration between IRBs and IBCs offers immediate and long-term benefits—especially when it comes to reviewing human gene transfer research projects. This effort not only ensures that regulatory requirements are met, but that risks and potential benefits are clearly communicated to research participants.

So, where might you begin bridging the gap? You could start by attending Institutional Biosafety Committees: Promoting Optimal Practice Now and in the Future. Hosted by the National Institutes of Health Office of Biotechnology Activities (NIH OBA) and the Eagleson Institute on June 24-26, this meeting aims to help biosafety professionals expand their knowledge of research and review. Participating organizations included: American Association of Laboratory Animal Science, American Biological Safety Association, American Society for Microbiology, and PRIM&R.

Moira Keane, a PRIM&R board member and planning committee member for the NIH OBA, underscored the importance of the topics on this year’s agenda. She noted that new developments “require well-versed committee members and staff who can navigate the intricacies of the review process to ensure timely and effective review of these cutting-edge projects. This conference will open the lines of communication on these issues.”

So whether you’re looking for deep background or indications of the impact of your research, visit
www.eagleson.org to learn more.

New Issue of PRIM&R’s Research Ethics Digest – Available Now

PRIM&R’s Research Ethics Digest (RED) explores noteworthy news events, studies, journal articles, and policy reports relevant research ethics. The latest issue of RED is now available to members.

Select articles include:

Animal Research and News
Locey M, Pietras C, and Hackenberg T. "Human Risky Choice: Delay Sensitivity Depends on Reinforcer Type." Journal of Experimental Psychology: Animal Behavior Processes. March 2009.

Ethical Considerations
Brown M. "Moral Complicity in Induced Pluripotent Stem Cell Research." Kennedy Institute of Ethics Journal. March 2009.

"Clinical Trials: The Balance Between Protecting Participants and Promoting Drug and Product Development." Canadian Medical Association Journal. March 2009.

Informed Consent & Research with Vulnerable Populations
Dresser R. "First-In Human Trial Participants: Not a Vulnerable Population, but Vulnerable Nonetheless." Journal of Law, Medicine & Ethics: Vulnerability in Biomedical Research. Spring 2009.

Elger B. "Research Involving Prisoners: Consensus and Controversies in International and European Regulations." Bioethics. May 2008.

Institutional Considerations
Hall M, et al. "Community Hospital Oversight of Clinical Investigators’ Financial Relationships." Ethics & Human Research. Jan-Feb 2009.

In the News
Clifford S. "Online Age Quiz Is a Window for Drug Makers." New York Times. March 22, 2009.

“Keep Informed Consent Interactive, Avoid Therapy Misconception.” Clinical Trials Administrator. March 2009.

Access to RED is one of many PRIM&R member benefits.
If you have questions about becoming a PRIM&R member, please contact us.

Letter from APHIS - Electronic Posting of Inspection Reports

Originally posted by the IACUC-Admin Listserv

Letter from Dr. Chester Gipson, Deputy Administrator for Animal Care, Animal and Plant Health Inspection Service (APHIS)
Electronic Posting of Inspection (A, B, C, E, H & T) Reports
May 13, 2009

Good morning,

I would like to take this opportunity to update you about new information on our website. In the last several years, APHIS began posting to its website certain frequently requested documents related to animal welfare, including facility inspection reports. Our goal was to be as transparent as possible and eventually create a system that would enable us to post all of our inspection reports online. I am happy to announce that APHIS has achieved that goal and beginning May 26, 2009, all inspection reports for Class A, B, and C licensees and Class E, H, and T registrants (animal breeders, dealers, exhibitors, and registered exhibitors, intermediate handlers, and carriers respectively) will be available online.

In the future, we also plan to post inspection reports for Class R registrants (research facilities); and those we do on a courtesy basis for Class F and Class V entities (Federal agencies and Veterans Administration facilities, respectively). We will provide an update on our progress in that area soon. In addition, we are looking closely at reestablishing our practice of sharing information with stakeholders regarding enforcement actions taken under the Animal Welfare Act. Again, we will share more details once we reach a decision about how best to convey this information.

Under the Animal Welfare Act, APHIS issues licenses and registers certain animal businesses and research facilities. Once licensed or registered, those entities must undergo periodic inspections in which their recordkeeping practices, housing structures, cleanliness, and handling of covered animals is reviewed for compliance with the AWA. During these inspections, reports are generated that notify a licensee or registrant if anything needs to be improved in order to meet the Agency's requirements. Inspection reports are currently available to the public through a Freedom of Information Act (FOIA) request. For the past several years, inspection reports have been the most frequently requested document from APHIS with approximately 850 requests fulfilled each year.

To access the inspection reports, visit the APHIS homepage and click on FOIA Reading Room, in the right-hand portion of the screen. The inspection reports will be available under the Animal Welfare heading in the Reading Room. Choose the type of licensee or registrant you are interested in, and then choose the State. Once you choose the State, you will be able to scroll through the alphabetical list of licensee or registrant names and make your selection. The documents are available in PDF format and you can open, print, and/or save as many as you like. Our list will be updated monthly.

Many of you may know that we maintain and make available lists of active licensed and registered facilities on our website. Many people have used these active lists to locate AWA-regulated facilities. For ease of reference we will continue to provide these lists to help you cross reference with the available inspection reports.

The posting of inspection reports to our website is a significant step in our ongoing efforts to be as transparent as possible about how we enforce animal welfare standards. This effort is consistent with the direction of President Obama to Federal agencies regarding openness and transparency. We have received positive feedback from many interested parties on the information we make available on the APHIS website, and we welcome continued feedback from our partners as we make additional strides.

Dr. Chester Gipson
Deputy Administrator for Animal Care, APHIS

Investigator Willingness: The Immeasurable Benchmark

Posted by guest blogger Eunice Newbert, Manager, Education and Quality Improvement Program at Children's Hospital Boston

After conducting study reviews of ongoing clinical trials for almost six years as part of the Education and Quality Improvement Program (EQuIP) at Children's Hospital Boston, my favorite part is, of all things, witnessing the evolution of investigators. However, it is not in terms of improvement quantitatively gauged through metrics, but rather in their notable change of perspective and understanding, indicative in their increased willingness to learn and improve.

As more research institutions implement quality improvement (QI) efforts to improve the protection of human subjects participating in clinical research, I am happy to have a growing number of peers with whom to discuss and debate an equally growing number of QI-related topics and issues. From defining non-compliance and developing monitoring/auditing tools, to setting benchmarks and deciding what to report, to whom and how, and to selecting studies for review, tracking trends, and working with IRBs…and the list goes on. But the one thing often missing from these discussions is why a specific investigator deviates from the approved research study.

To put it simply, my job is to identify any deviations, non-compliance or areas for improvement, and then to develop corresponding corrective actions and education. Ultimately this information will be quantified, tracked, and used to develop education and resources for continual improvement at an institutional level. But to make this whole process effective, I believe the QI reviewer must take the time to understand the context in which each deviation occurred when first observed and then to tailor comments accordingly for each investigator.

When QI reviewers take the time to understand the context in which a deviation occurred, it allows us to translate the regulations—asking how and why they apply to that specific issue—and then tailor corrective actions to the investigator. From personal experience, this fosters a willingness from the investigator to make corrective actions beyond the study documentation and reporting. With a better understanding of how and why specific regulations apply, I find investigators are more willing to make changes to their overall conduct, which, in the end, increases the chances for continual and ongoing improvement after our review is over.

Of course, I will always use my monitoring tools to track measurable benchmarks to help determine what we, as an institution, can do to improve the compliance of our research community. However, during the final meeting of a study review, it is when I personally see a new willingness from the investigator to learn and improve, that I feel confident I have done my job well.

The comments and opinions in this post reflect the opinion of the author, and do not necessarily represent the opinion of PRIM&R or its Board of Directors.

Clarifications Regarding IRB Registrations and FWAs

OHRP has posted clarifying language on its website regarding OHRP-approved assurances and OHRP-registered Institutional Review Boards (IRBs) or Independent Ethics Committees (IECs). Regarding registered IRBs, the fact that an IRB or an IEC is registered with OHRP does not mean that OHRP has determined that the IRB reviews research in accordance with the requirements of the Department of Health and Human Services (HHS) Protection of Human Subjects regulations, 45 CFR part 46, and does not mean that the IRB or IEC has the appropriate competence or expertise to review a particular research project.

Regarding approved assurances, the fact that OHRP has approved an institution's assurance does not mean that OHRP has determined that the institution is complying with the requirements of the HHS Protection of Human Subjects regulations, 45 CFR part 46. It means that an institution has submitted all of the documentation OHRP requires to constitute a commitment by the institution to comply with the requirements of 45 CFR part 46 when its employees or agents engage in non-exempt human subjects research conducted or supported by HHS or other research covered by the assurance.

These clarifications are now included on several of OHRP's web pages related to IRB registration and assurances (e.g., http://www.hhs.gov/ohrp/assurances/ and http://www.hhs.gov/ohrp/assurances/assurances_index.html); and as a frequently asked question (FAQ) in OHRP's set of FAQs on IRB registration, and OHRP's set of FAQs on assurances.

New research and collaboration website - EthicShare

Jeffrey Kahn, director and professor at the University of Minnesota Center for Bioethics recently announced the beta release of a new tool for bioethics research and collaboration. EthicShare (www.ethicshare.org) is a new way to search for and access bioethics research materials and a space for scholars to collaborate, and it's now ready for our community to use and explore.

The searchable database is unique in that it pulls together relevant records for scholarly articles, books, and popular press literature. EthicShare content is drawn from the world’s premiere sources, including PubMed, WorldCat, and major news sources. Soon, we will expand the content to include commission reports, dissertations, images and text from digital collections, as well as blogs and more. The records are fully searchable, and when available from your institution, the full text can be downloaded using the Find-It feature.

The initial focus of the EthicShare collection is bioethics, but the collection will continue to grow with the goal of becoming a comprehensive collection of high quality materials in the topic areas of practical and applied ethics. EthicShare has been designed to address the needs of interdisciplinary ethics scholars, specifically giving you the ability to organize your research materials, share them with colleagues, and discuss current topics or resources.

The design of the site has been driven by input from over 200 scholars from the fields of bioethics and other applied ethics disciplines. Now you're encouraged to try the site and offer ways to improve it.

To visit EthicShare, got to www.ethicshare.org; by registering for an account you will not only have access to full text of materials subscribed to by your institution, but be able to create groups, organize folders, and more. However you use EthicShare's features, we'd appreciate your feedback. If you have ideas about possibilities for future features and tools, please contact Jeffrey Kahn or the project director, Kate McCready.

The planning and development of EthicShare has been generously funded by the Andrew W. Mellon Foundation, with additional support from the University of Minnesota and the National Science Foundation. Partners from the following institutions have helped plan and govern this project: Indiana University-Purdue University Indianapolis; Indiana University - Bloomington; University of Virginia; Stanford University; University of Mississippi; Georgetown University (planning and use of the Bioethics Thesaurus); and the Council on Library and Information Resources.

Exchange YOUR ideas and strategies for IRBs/HRPPs

2009 Advancing Ethical Research Conference – Call for Poster Abstracts!
Deadline for Submission – January 30

We encourage you to consider participating in the Annual Poster Presentation at PRIM&R’s 2009 Advancing Ethical Research Conference!


The development and presentation of Scientific or Programmatic Posters promote interdisciplinary sharing and collaboration, and facilitate the exchange of ideas, information, and practical strategies for managing the many challenges faced by human research protection program (HRPP) professionals. Last year, nearly one hundred posters were displayed, four of which were selected for the panel session, and 16 of which were selected for moderated discussions.

Posters may be based upon either new program initiatives or empirical research, and fit into one of two categories:

• Programmatic Abstracts describe novel or innovative approaches to the management, function, and operations of IRBs and HRPPs. If you have created and implemented a successful new program or procedure this year, please consider sharing it with your colleagues.
• Scientific Abstracts address empirical studies related to research ethics. PRIM&R conference attendees are hungry for cutting edge research results that can improve the IRB/HRPP’s functioning at their respective institutions, so please "strut your stuff" and be part of our vibrant marketplace of ideas and information.

Interested in submitting an abstract for poster presentation? Please visit our website for more information, including guidelines, important dates, and frequently asked questions, and to submit your abstract online.

Financial Conflicts of Interest: One Size Doesn’t Fit All

Posted by guest blogger, Kate-Louise Gottfried

The comments and opinions in this post reflect the opinion of the author, and do not necessarily represent the opinion of PRIM&R or its Board of Directors.

Are you tearing your hair out over financial conflicts of interest (COI) in research? Does it seem that not a day goes by without some article that either makes you sing in agreement or scowl in response, “you know: It’s Just Not That Simple.” Senator Grassley has raised important questions but has he gone to extremes? Is he on a witch-hunt?

I found the February 2, 2009 Boston Globe article amusing: “Harvard will Stiffen Rules at Medical School; Conflict of Interest Will be Redefined” which quoted Dr. Korn as saying: “Harvard's job is considerably more challenging, because the medical school does not own or control its affiliated teaching hospitals, where clinical faculty members see patients and interact with drug company salespeople.” Further, “most clinical faculty are employees of the hospitals, not the medical school.”¹ Other situations raise different challenges, for instance those individuals that are not employees of an entity but may have a faculty appointment.

Welcome to the real world where formula and one-size fits all doesn’t work. Confronted with the practical realities of daily operations, policy applications, and distinct differences between one entity versus another within related organizations, implementation of COI policy can become a dirty business.

Many assert that the medical community should step up to the plate and lead the way not simply by obtaining financial disclosures from individuals, but also by changing multiple policies. Easier said than done. What’s required to protect from genuine bias and what’s merely cosmetic, a bureaucratic add-on with no practical effect?

For example, some advocate for precluding direct funding by pharmaceutical companies to Academic Medical Centers for continuing medical education. Almost everyone agrees that docs participating on speakers’ bureaus for pharma touting particular drugs are an extension of company marketing. Even the most pristine investigator, who truly believes in the drug being assessed for a particular disease or condition—and who’s also a company speaker—incurs at least the appearance of impropriety. It’s akin to Supreme Court Justice Potter Stewart’s response to pornography, I can’t tell you what it is, but “I know it [obscenity/pornography] when I see it.”

I don’t disagree with the appropriate concerns raised about these situations, and the particular nuances that determine the appropriate course of action, but here’s my question: What is the difference between a pharmaceutical company providing a medical center with $50,000 designated for medical education and the company brokering its support of medical education by engaging a third party to orchestrate the education program?

Appropriate separation of responsibilities intra-institutionally will negate any undue influence. Let’s be reasonable, and closely examine relationships before we put the kabash on everything and anything. As one professor challenged, what then should we do if we're not permitted to accept sponsor funding for such activities, and efforts to obtain funding from the Dean's office are futile?

Luckily, Dr. Flier, the dean of Harvard medical school agrees with me. He indicated that Harvard’s COI committee probably will focus on continuing medical education. “The medical school sponsors several hundred courses for doctors each year, Harvard officials said, and drug companies pay about 13 percent of the cost. He said the medical school does not allow pharmaceutical companies to influence the content of courses. But some medical schools have adopted additional safeguards against industry influencing education for physicians, such as requiring companies to give money to a central office, which then distributes it to pay for courses. Others are discussing banning industry funding altogether.”² I agree with Dr. Flier’s opinion that categorically barring company funding for education is counterproductive and unwise.

References:
1: The Boston Globe, 2/3/09 Harvard will stiffen rules for staff at med school, Liz Kowalczyk
2: The Boston Globe, 2/3/09 Harvard will stiffen rules for staff at med school, Liz Kowalczyk (emphasis added)

PRIM&R/APPI Panel at the ACRP/APPI Meeting

Posted by Joan Rachlin, executive director

I spent time at the ACRP/APPI meeting in Denver last month and wanted to share with you some of the highlights of a panel that PRIM&R helped organize in conjunction with APPI. Before starting, though, I’d like to extend my boundless thanks to Greg Koski and Hugh Tilson for organizing the panel, and to Nancy Dubler, Norm Fost, and Debra Lappin for their wise, principled, and thoughtful comments during the session.

The panel was on the topic of human subjects research. Dr. Koski, quoting Dr. Fost, noted that the system of protecting human subjects, and the regulations surrounding it, needed “diagnostics.” He cited the Journal of the American Medical Association paper written by Dr. Fost and Robert Levine, titled “The Dysregulation of Human Research.”

Dr. Dubler explained that the research protection system arrived at its current point “because it seemed like the right thing at the time.” She elaborated and pointed out that in the 1950s post-war era, America was quite smug, and following the Nuremberg trials, the country insinuated, “things like that don’t/won’t happen here.”

Despite that denial, though, abuses of research subjects in the United States— most notably, Tuskegee, but also the Jewish Chronic Disease Hospital, Willowbrook, radiation studies, etc.—began to come to light in the 1970s. The response was to regulate researchers, NOT research. In those early years, the main question was whether the risks of the research were reasonable in light of the benefits to be gained.

Another watershed moment in the early years of research protections was Henry Beecher’s article, “Ethics and Clinical Research,” published in the New England Journal of Medicine in 1966. Dr. Beecher found more than 100 examples of ethical lapses in research studies, but still concluded that regulations were not necessary unless there was an egregious violation of ethical principles or established policies.

And egregious violations did, sadly, occur: Ellen Roche died in a study at Johns Hopkins (JHU) in 2001, and another normal volunteer died in a study at the University of Rochester (UR) in 1996. Both of these tragedies involved investigator-initiated protocols, and together with the death of Jesse Gelsinger at the Hospital of the University of Pennsylvania in 1999, the problems began to feel cumulative. Some felt the respective institutional review boards (IRBs) should have been more involved in those protocols. Others were more blunt, implying that the IRBs seem to have been “asleep.” Most acknowledged that in both cases, the system for protecting human subjects broke down.

Dr. Dubler underscored that asleep-at-the-wheel perception by noting that what began as a structure for the protection of human subjects had become, in many places, a structure for the protection of the institution. The purpose of the regulations was to implement the principles of the Belmont Report: to help those working with human subjects think about autonomy, protection, and justice. The regulations failed in that respect, she said, as had IRBs to really though about autonomy, they would not have put a 20-page consent form in front of the subject.

Dr. Fost agreed and said there is a widespread obsession with documentation and compliance that has consumed IRBs and investigators with unreasonably high volumes of paperwork.

The panelists then turned to the challenging problem of how to reverse this process. Ms. Lappin expressed her belief that an interactive process should be developed whenever an individual is approached about entering a trial, so that s/he can meaningfully participate in the decision-making process.

Changes such as these often require a culture change on the institutional level. What can change realistically, though? The panelists advocated for including a short consent cover sheet with every consent form. Louis Lasagna’s research demonstrated that the short form had the highest comprehension rate. Researchers can have BOTH kinds of forms, but NEED a short (no more than 150 words) form that includes the essential facts of the study.

Sadly, though, the panelists agreed that a lot of folks don’t want to change the system. Institutions feel protected by the IRB, and thus there is no widespread movement to change the focus.

All told, this session at the ACRP/APPI Conference allowed me the privilege of listening to four leaders in the human subject protections field. Thanks again to Drs. Koski, Fost, Dubler, and to Ms. Lappin. Thank you for keeping our shared fires burning.

Coast IRB to close

(Originally posted on the Wall Street Journal online)

Coast IRB said the disclosure of the sting and an April 14 warning letter from the Food and Drug Administration describing the company's violations led several high-profile customers to pull their business. As a result, "Coast IRB's owners decided, through counsel, to cease future company operations," a company statement said.

The company had said earlier that it intended to temporarily halt accepting new business and to stop enrolling patients in studies that had begun while it made a thorough overhaul of its operations.

Read the entire article here.

In April's Newsletter...

The most recent issue of the PRIM&R Newsletter (members only) was distributed on Thursday, April 30.

In addition to our regular features, such as Recent Headlines, Government and Legal News, and Public Policy, this issue included…

• Information about the Call for Poster Abstracts for the 2009 Advancing Ethical Research Conference;
• A brief anthology of news articles about the recent Coast IRB sting operation;
• An article from PRIM&R member Renée LLanusa-Cestero titled “A Double Standard in Human Research Protection;”
• A featured talk from PRIM&R Through the Years, a 532-page compilation of presentations delivered by internationally esteemed experts in the field of research ethics at PRIM&R's past annual meetings. This month’s feature is a panel from the 1989 Whither IRBs in the 1990s?New Directions and Decisions meeting, titled “Uses of Fetal Tissue, Commercial Use of Cell Lines and Tissues, Physicians as Human Guinea Pigs, Genetic Testing/Gene Replacement Research, and a ‘Send-Off to the ‘90s’”;
• Information about “Gene Talk: What do we expect from Families and their Doctors?,” a US national study sponsored and funded by the National Institute of Health; and
• A list of those individuals who passed the CIP® exam in March 2009.

Can’t find the Newsletter in your inbox? Check out the Newsletter Archives.

Want to become a PRIM&R member? Learn more.