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  Building a policy on stem cells in MS
MS in focus Issue 11 - 2008

Cathy Carlson, Senior Director, Research Information, National MS Society (NMSS), USA

In 2005, the Stem Cell Research Task Force of the National MS Society (USA) met with stem cell researchers, legal and regulatory experts, bioethicists, and other voluntary health agencies. The task force found that research with all types of stem cells held great promise, potential, and hope for people affected by MS, and that there was a high likelihood that this research would improve our understanding of the disease process and lead to new pathways for therapeutic intervention. Members recommended that the Society be more publicly active to ensure that this research could move forward. The Society approved the recommendations and asked chapter volunteers and staff leadership to voice concerns, but little opposition was raised. “We did lose a few key volunteers whose counsel we valued highly by taking a more public profile on embryonic stem cell research, …however, we would not remain true to our mission if we continued to stay silent on this promising area of research,” noted John R. Richert, MD, Executive Vice President of Research and Clinical Programs of the National MS Society (USA).

The task force found that research with all types of stem cells held great promise, potential, and hope for people affected by MS.

Programme cover from the Stem Cell Research Summit, convened by the National MS Society (NMSS) and the MS International Federation (MSIF) on January 16-19, 2007. It brought together leading stem cell and MS experts from around the world to explore the potential of all types of stem cells for the treatment, prevention and cure of MS.
Programme cover from the Stem Cell Research Summit, convened by the National MS Society (NMSS) and the MS International Federation (MSIF) on January 16-19, 2007. It brought together leading stem cell and MS experts from around the world to explore the potential of all types of stem cells for the treatment, prevention and cure of MS.

Recommendations from the National MS Society Stem Cell Research Task Force

Among its recommendations were that the Society should:
• Continue to be open to funding stem cell research, including human embryonic stem cells.
• Support somatic cell nuclear transfer (“therapeutic cloning”: implanting a person’s DNA into an unfertilised egg to grow stem cells that could be used to treat that person’s medical condition) for biomedical research, but oppose its use for reproductive purposes.
• Publicly advocate for policies conducive to embryonic stem cell research, and clearly articulate the Society’s position.
• Respect the beliefs of those who may oppose the Society’s stance, but not permit such beliefs to limit its research or advocacy activities.
• Establish an Ethical, Legal & Social Implications Committee to review Society policies periodically and serve as a forum for addressing public comments.
• Sponsor a scientific workshop on stem cell research in MS.

John R. Richert, MD welcomed Stem Cell Summit participants and asked for their help in setting research priorities.
Photo ©2007 Jessica Brandi Lifland
John R. Richert, MD welcomed Stem Cell Summit participants and asked for their help in setting research priorities.

• Establish an Ethical, Legal & Social Implications Committee to review Society policies periodically and serve as a forum for addressing public comments.
• Sponsor a scientific workshop on stem cell research in MS.
Steps to consider in developing a stem cell policy What steps might other MS societies take to develop a stem cell policy? Here are a few recommendations, based on the NMSS’s experience:
• Cooperate with research centres in your country, provide them with any support they need.
• Know the political climate of your country in terms of human embryonic stem cell research.
• Through letters received or a survey, understand where the majority of your constituents and supporters stand on stem cell research (providing information about its promise for people with MS may help pave the way for a positive response).
• Consider steps you might take to propel this research. Is it to advocate for policy changes, to join a coalition working for change, to fund stem cell research? For each of the possible steps, have your leadership weigh the possible risks (such as losing key supporters) and benefits (such as moving research forward for people with MS).
• Once you have arrived at a position, invest time in educating your constituents about the issue and communicating your position clearly and consistently to them.
• Let your mission drive your actions.

Details about Summit presentations can be found on the NMSS’s website: www.nationalMSsociety.org/stemcell

MS in Focus

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