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May 28, 2010

Stem Cell Tourism and the Power of Hope

his paper explores the notions of hope and how individual patient autonomy can trump carefully reasoned ethical concerns and policies intended to regulate stem cell transplants. We argue that the same limits of knowledge that inform arguments to restrain and regulate unproven treatments might also undermine our ability to comprehensively dismiss or condemn them. Incautiously or indiscriminately reasoned policies and attitudes may drive critical information and data underground, impel patients away from working with clinical researchers, and tread needlessly on hope, the essential motivator of patients, advocates and researchers alike. We offer recommendations to clinicians and health care providers to help balance the discourse with individuals seeking treatment while guarding against fraud, misconception, and patient harm. [Premium (The American Journal of Bioethics)]

Stem Cell Tourism and Doctor’s Duties to Minors – A View from Canada

While the clinical promise of much stem cell research remains largely theoretical, patients are nonetheless pursuing unproven stem cell therapies in jurisdictions around the world—a phenomenon referred to as “stem cell tourism.” These treatments are generally advertised on a direct-to-consumer basis via the Internet. Research shows portrayals of stem cell medicine on such websites are overly optimistic and the claims made are unsubstantiated by published evidence. However, anecdotal evidence suggests that parents are pursing these “treatments” for their children, despite potential physical and financial risk. Physicians are in a unique position as they can be expected to be involved in, or privy to, such decisions. In this paper, we consider what duties physicians may have toward minor patients whose parents/guardians wish to engage in stem cell tourism on their behalf. We use the Canadian perspective to address the broadly relevant issues raised by this trend. [Premium (The American Journal of Bioethics)]

New Issue of Archives of Internal Medicine is Now Available

Archives of Internal Medicine (Volume 170, Number 9, May 10, 2010) is now available by subscription only.

Articles Include:

  • “Less Is More: How Less Health Care Can Result in Better Health” by Deborah Grady and Rita F. Redberg, 749-750.

New Issue of The American Journal of Bioethics is Now Available

The American Journal of Bioethics (Volume 10, Issue 5, 2010) is now available by subscription only.

Articles Include:

  • “Bioethics and President Obama” by David Magnus, 1-2.
  • “Stem Cell Tourism and Doctors’ Duties to Minors—A View From Canada” by Amy Zarzeczny and Timothy Caulfield, 3-15.
  • Stem Cell Tourism and the Power of Hope” by Charles E. Murdoch and Christopher Thomas Scott, 16-23.
  • Hope, Hype and Help: Ethically Assessing the Growing Market in Stem Cell Therapies” by Arthur Caplan and Bruce Levine, 24-25.
  • “Taking Care of Hope” by Chris Feudtner, 26-27.
  • “Stem Cell Tourism: Doctors’ Duties to Minors and Other Incompetent Patients” by Jennifer Chandler, 27-28.
  • “Insights from Patients’ Blogs and the Need for Systematic Data on Stem Cell Tourism” by Aaron D. Levine, 28-29.
  • “Tweeting Science and Ethics: Social Media as a Tool for Constructive Public Engagement” by Alan C. Regenberg, 30-31.
  • “In Pursuit of ‘Informed Hope’ in the Stem Cell Discourse” by Joanne Reimer, Emily Borgelt, and Judy Illes, 31-32.
  • “Hope Alone is Not an Outcome: Why Regulations Makes Sense for the Global Stem Cell Industry” by Douglas Sipp, 33-34.
  • “Regulations Are Needed for Stem Cell Tourism: Insights From China” by Dominique McMahon and Halla Thorsteinsdóttir, 34-36.
  • “Stem Cell Tourism and The Role of Health Professional Organizations” by G. K. D. Crozier and Kyle Thomsen, 36-38.
  • “Traveling Across Borders – The Pitfalls of Clinical Trial Regulation and Stem Cell Exceptionalism” by Christine Hauskeller and Dana Wilson-Kovacs, 38-40.
  • “Stem Cell Tourism – A Challenge for Trans-National Governance” by Carmel Shalev, 40-42.
  • “A Three-Pronged Management Strategy to Stem Cell Tourism” by Timothy Dolan, 43-45.
  • “Growth of an Industry: How U.S. Scientists and Clinicians Have Enabled Stem Cell Tourism” by Mary Devereaux and Jeanne F. Loring, 45-46.
  • “Hopes and Illusions” by Jim Guest and Kim Anderson, 47-48.
  • “The Role of Patients and Patient Advocacy Groups in Educating Patients on the Importance of Legitimate Scientific Research” by Susan Foster, 49.
  • “Response to Open Peer Commentaries on ‘Stem Cell Tourism and the Power of Hope’” by Charles E. Murdoch and Christopher Thomas Scott, W1-W3.

New Issue of Stem Cells is Now Available

Stem Cells (Volume 28, Issue 5, May 2010) is now available by subscription only.

Articles Include:

  • “Induced Pluripotent Stem Cells : It Looks Simple but Can Looks Deceive?” by Majlinda Lako, Lyle Armstrong, and Miodrag Stojkovic, 845-850.
  • “Human Cardiospheres Are a Source of Stem Cells with Cardiomyogenic Potential” by Darryl R. Davis, Rachel Ruckdeschel Smith, and Eduardo Marbán, 903-904.
  • “Concise Review: Bone Marrow-Derived Stem/Progenitor Cells in Cutaneous Repair and Regeneration” by Yaojiong Wu, Robert C. H. Zhao, and Edward E. Tredget, 905-915.
  • “Concise Review: Mind the Gap: Challenges in Characterizing and Quantifying Cell- and Tissue-Based Therapies for Clinical Translation” by Erin A. Rayment and David J. Williams, 996-1004.

May 27, 2010

Normalising abortion ignores women’s needs

Cath Elliott has called Marie Stopes’s new abortion advertisement “innocuous” because the only abortion- or pregnancy-related term it uses is “late”. Laurie Penny has interpreted the advert’s cagey language as “normalis[ing] free and frank discussion of reproductive issues”. But the advert is neither innocuous nor positive about open debate. It shows three women, each alone and worried about their unwanted pregnancy. It then provides the company hotline. (Guardian)

New Breed of Specialist Steps In for Family Doctor

By the time Djigui Keita left the hospital for home, his follow-up appointment had been scheduled. Emergency health insurance was arranged until he could apply for public assistance. He knew about changes in his medication — his doctor had found less expensive brands at local pharmacy chains. And Mr. Keita, 35, who had passed out from dehydration, was cautioned to carry spare water bottles in the taxi he drove for a living. (New York Times)

Why DNA Doesn’t Always Predict Disease

When James Watson, codiscoverer of the double helix, had his genome fully sequenced in 2008, there was one piece of DNA he insisted the lab not tell him about: whether he had a genetic variant that significantly increases the chance of developing Alzheimer’s disease. Called apoE, the gene comes in three variants, of which APOE4 increases the risk of Alzheimer’s between 10- and 30-fold. Different people have different feelings about learning what lies in their medical future, especially if it is something for which there is neither cure nor treatment. (House got good mileage out of this dilemma when Thirteen, played by Olivia Wilde, decided to find out whether she carries the gene for the inevitably fatal, incurable Huntington’s disease. She does.) If studies coming out over the last few months are any indication, however, most of us can postpone making this difficult decision: the revolution in using DNA to read people’s medical future is turning out to be more hype than hope. (Newsweek)

10 retractions and counting

In an unusually large case of misconduct, an immunology lab at the Mayo Clinic in Rochester, Minnesota, has pulled 10 papers so far, with about five more expected, and cancelled a clinical trial after a senior research associate was found guilty of falsifying data. (The Scientist)

Special report: Where next for synthetic life?

MAKE a genome – check. Transplant it into an emptied cell to create the world’s first synthetic life form – check. Frenzied media coverage accusing the researchers concerned of “playing God” – check. (New Scientist)

Australia: One-third of elderly patients malnourished

Around one in three elderly hospital patients is malnourished and many more are at risk according to new research. It is not just the quality of the hospital food putting some patients at risk of malnutrition, the data says, but also the way meal times are managed. (ABC News)

Doctors allowed to forcibly operate on woman with phobia of hospitals

A high court judge today gave doctors permission to forcibly sedate a woman who has a phobia of hospitals at her home, so that she can be taken for cancer surgery against her will. (The Guardian)

Doctors Reverse Stand on Circumcision

The American Academy of Pediatrics has reversed its decision last month regarding the practice of female circumcision by immigrants from some African, Middle Eastern and Asian cultures. The academy had suggested in a policy statement that doctors be given permission to perform a ceremonial pinprick or nick on girls if it would keep their families from sending them overseas for the full circumcision. (New York Times)

Looking at nanotech through the lens of religion

Scientific advances and religious beliefs have clashed repeatedly in recent years over issues such as stem cell research and evolution. As nanotechnology becomes a greater part of Americans’ daily lives, researchers have asked whether it will face similar opposition. Experts say that the answer lies in finding solutions to the larger challenges of communicating between science and religion. (Medill News)

No race disparity seen in IVF using frozen embryos

Using frozen embryos may level the playing field for African-American and white women undergoing in vitro fertilization, a new study suggests, despite earlier research showing that African- American women have lower success rates with the procedure than white women do. (Reuters)

Hundreds of EMTs, paramedics said to be working with fake credentials

More than 200 emergency medical technicians and paramedics in Massachusetts and New Hampshire have been practicing without legitimate certification, having paid certificate mills for fake credentials without taking any medical training, an investigation by Massachusetts public health officials has found. (The Boston Globe)

First human ‘infected with computer virus’

Dr Mark Gasson from the University of Reading contaminated a computer chip which was then inserted into his hand. The device, which enables him to pass through security doors and activate his mobile phone, is a sophisticated version of ID chips used to tag pets. (BBC News)

New Issue of Nature is Now Available

Nature (Volume 465, Number 7295, May 13, 2010) is now available by subscription only.

Articles Include:

  • “Scientists’ Turn to Win Votes,” 135.
  • “Science Subpoenaed,” 135.
  • “Advising the Adviser,” 136.
  • “Synthetic Biology: Search and Destroy,” 138.
  • “Neuroscience: Ageing on the Brain,” 138.
  • “Genomics Goes Beyond DNA Sequence” by Alla Katsnelson, 145.
  • “Vaccinate Before the Next Pandemic?” by Klaus Stöhr, 161.
  • “A Proximity-Based Programmable DNA Nanoscale Assembly Line” by Hongzhou Gu, Jie Chao, Shou-Jun Xiao and Nadrian C. Seeman, 202.

New Issue of New England Journal of Medicine is Now Available

New England Journal of Medicine (Volume 362, Number 19, May 13, 2010) is now available by subscription only.

Articles Include:

  • “The Cost Implications of Health Care Reform” by J. Gruber.
  • “Health Insurance Reform and the Tensions of Federalism” by C.C. Jennings and K.J. Hayes
  • “Health Insurance Exchanges – Key Link in a Better-Value Chain” by J. Kingsdale
  • “Tobacco Product Regulation – A Public Health Approach” by L. Deyton and Others
  • “Whistle-Blowers’ Experiences in Fraud Litigation Against Pharmaceutical Companies” by A.S. Kesselheim and Others

Event: QA/QI 101: Fundamentals of Quality Assurance and Improvement on Human Subjects Research

QA/QI 101: Fundamentals of Quality Assurance and Improvement in Human Subjects Research
Tucson, AZ
June 6, 2010

This full-day, introductory course will provide attendees with an overview of the basic elements in developing and implementing a Quality Assurance and Improvement (QA/QI) program. To keep pace with an evolving regulatory environment, a growing number of research institutions are creating structured QA/QI programs focused on ensuring investigator and IRB regulatory compliance.  Organizations are improving performance with the creation of approved protocol, contract and budget, as well as with institutional policies and applicable federal regulations. This course will discuss how QA/QI programs can ensure compliance and improve performance through post-approval monitoring of on-going studies, facilitating communications among investigators, IRBs and other research administration offices, and continuing education for the research community. This course will present multiple examples of how to design a program based on different institutional needs, structures, available resources and support. Attendees will also have the opportunity to participate in lively group discussions during the program.

For more information or to register

May 26, 2010

Are We Ready for Genetic Mug Shots?

By an overwhelming majority, the U.S. House of Representatives passed a bill last week that would provide payment incentives for states to collect genetic material — by force, if necessary — from individuals arrested for certain crimes, regardless of if they are formally charged or convicted. Declan McCullagh at CNet News explains “Katie’s Law” in-depth, and also provides a brief history of related legislation in the U.S. and the U.K.

What is apparent from McCullagh’s synopsis is that The Katie Sepich DNA Collection Act of 2010 is only the latest in a series of laws and judicial rulings that are eroding genetic privacy in the interest of law enforcement.

There is a well-established tradition in the life sciences that human subjects must voluntarily provide any of their cells that researchers wish to collect and study. Ethically, this derives from a respect for a patient’s autonomy and bodily integrity. While one could argue that convicted criminals have forfeited their right to autonomy by breaking the law, this reasoning does not apply to those merely suspected of committing a crime. If genetic privacy and bodily integrity can be disregarded for the purposes of law enforcement, the precedent is set for DNA collection to be viewed as another type of police mug shot, despite there being substantial ethical differences.

There are two related concerns that surface as our society becomes both more reliant on genetic information and more adept at using it. First, what data will be stored and for how long? And second, how do we safeguard against “genetic profiling” or other abuses?

Currently, an entry in the FBI’s national DNA database, CODIS, is only an abridged profile of a person’s genome. With genetic sequencing rapidly becoming more affordable, though, it is conceivable that in the near future CODIS may store an individual’s entire DNA sequence indefinitely. In this scenario, what if a person’s DNA revealed a genetic predisposition for violence, or showed that he or she was related to other registered offenders in the CODIS database? As a society, are we ready for “genetic mug shots” to become commonplace, or will such details encourage prejudice and corrupt justice?


The Bioethics Poll
Should individuals and/or institutions be allowed to patent human genes?
Yes, with some qualifications

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Which area of research should more money be invested in:
Animal-Human Hybrids
Gene Therapy
Reproductive Technology
Stem Cell Research
"Therapeutic" Cloning
None of the above

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