Non-Profit MS Charity Ethics
Posted: Sun Jun 27, 2004 12:07 pm
I wonder about ethics policies at the NMSS and other MS non-profits. One issue that concerns me in particular is the relationship with pharmaceutical companies. Specifically, I wonder about restrictions that might come with grants by drug companies, and I wonder about investments by such charities as well as personal investments by the executives and officers of MS charities.
At the moment, we have the ABCR drugs that have been approved. It appears that Antegren is coming sometime next year, and there are others in the pipeline. These are very expensive and highly profitable drugs, and this begs the question of whether the NMSS might be induced at the organizational level to overlook effective treatments that are cheaper.
It would be worthwhile to know what ethical policies are in place at the NMSS to forestall this possibility. The same would hold true for other multiple sclerosis organizations.
A related issue is investment. Let's imagine that NMSS is insulated from drug company pressure in a direct sense, but that the organization has invested money in drug companies. Wouldn't that pose a conflict of interest? What about officers and/or senior executives holding stock in the companies that make MS drugs? This could give them incentives to make decisions unfavorable to competitors of the companies whose shares they own.
Similarly, are the NMSS's people (and those in other MS charities) restricted from putting personal money into start-up drug companies? Let's imagine that you're an executive of a charity and in the course of your work you come into contact with what you think is a promising approach. Startup companies typically offer very attractive terms to ground-floor investors, but if someone in an MS charity got such terms it would raise ethical issues.
For one thing, the individual would have every incentive to promote the approach taken by the promising startup, perhaps to the detriment of competitors. The startup company would have every incentive to tell other prospective investors that "Mr. So-and-So of (name the MS charity) is an early investor," thereby conferring a legitimacy not enjoyed by the competition.
Similar issues arise as every stage of the early financing process. Often, the boards of directors of young companies will grant "friends and family shares" to people they know. Could someone at NMSS or another MS charity accept such shares? Similarly, young companies often invite outsiders onto their boards of directors, or on to so-called "advisory" panels. These positions often come with free or very cheap shares.
And there would be the question of who really owns these early opportunities, given that the officer of the MS charity got them by virtue of work he was doing in the charity's name. Shouldn't the charity get the opportunity, not the officer? And if the charity would turn it down because of conflicts of interest, then why not the officer as well?
I'm interested in how other people think of these issues. In particular, I'd like to know how Art, of the Boston Cure Project, regards them. And how about Boston Cure Project? You were a high-tech executive and the press clippings on Boston Cure Project talk about its "entreprenurial" nature, and you've been engaged in a comprehensive survey of the research on MS, financed by donations to the non-profit organization that you run. Is the "Cure Map" the only product, or are you also accumulating a personal investment map? If so, are there others who will share the information and how are they designated?
What are your organization's politices on ethics and conflict of interest in the areas I've mentioned? Art, do you know how the NMSS handles these issues?
At the moment, we have the ABCR drugs that have been approved. It appears that Antegren is coming sometime next year, and there are others in the pipeline. These are very expensive and highly profitable drugs, and this begs the question of whether the NMSS might be induced at the organizational level to overlook effective treatments that are cheaper.
It would be worthwhile to know what ethical policies are in place at the NMSS to forestall this possibility. The same would hold true for other multiple sclerosis organizations.
A related issue is investment. Let's imagine that NMSS is insulated from drug company pressure in a direct sense, but that the organization has invested money in drug companies. Wouldn't that pose a conflict of interest? What about officers and/or senior executives holding stock in the companies that make MS drugs? This could give them incentives to make decisions unfavorable to competitors of the companies whose shares they own.
Similarly, are the NMSS's people (and those in other MS charities) restricted from putting personal money into start-up drug companies? Let's imagine that you're an executive of a charity and in the course of your work you come into contact with what you think is a promising approach. Startup companies typically offer very attractive terms to ground-floor investors, but if someone in an MS charity got such terms it would raise ethical issues.
For one thing, the individual would have every incentive to promote the approach taken by the promising startup, perhaps to the detriment of competitors. The startup company would have every incentive to tell other prospective investors that "Mr. So-and-So of (name the MS charity) is an early investor," thereby conferring a legitimacy not enjoyed by the competition.
Similar issues arise as every stage of the early financing process. Often, the boards of directors of young companies will grant "friends and family shares" to people they know. Could someone at NMSS or another MS charity accept such shares? Similarly, young companies often invite outsiders onto their boards of directors, or on to so-called "advisory" panels. These positions often come with free or very cheap shares.
And there would be the question of who really owns these early opportunities, given that the officer of the MS charity got them by virtue of work he was doing in the charity's name. Shouldn't the charity get the opportunity, not the officer? And if the charity would turn it down because of conflicts of interest, then why not the officer as well?
I'm interested in how other people think of these issues. In particular, I'd like to know how Art, of the Boston Cure Project, regards them. And how about Boston Cure Project? You were a high-tech executive and the press clippings on Boston Cure Project talk about its "entreprenurial" nature, and you've been engaged in a comprehensive survey of the research on MS, financed by donations to the non-profit organization that you run. Is the "Cure Map" the only product, or are you also accumulating a personal investment map? If so, are there others who will share the information and how are they designated?
What are your organization's politices on ethics and conflict of interest in the areas I've mentioned? Art, do you know how the NMSS handles these issues?
