Research In a Flaking Newfoundland Community
Dear Ed: Like many psoriasis sufferers, I have just accepted the flakes as a part of life that isn't going to go away too soon, and try to ignore them as much as possible. It never even occurred to me to do any research about the affliction until my mother-in-law suggested in when I flared up after the birth of my son. (I was nice and clear while pregnant.) Anyway, I have been greatly entertained by this site.
I don't know much about gene therapy, but I do know that there is a pharmaceutical company working with a Newfoundland-based dermatologist to locate the gene that "allows" psoriasis to be present. An article that focused mostly on the ethical problems of using a community's genes in order to make money appeared in The Globe and Mail (I think it was December, 1998).
Apparently, a very large proportion of people living on the west coast of Newfoundland, where there is only one dermatologist, are flakers. The relative isolation of the community and the high percentage of sufferers make the Rock a unique opportunity for genetic research. I don't remember much of what I read, but will try to track down a reprint of the article. Perhaps a cure is on the way. -Maria V.
Ed's Response: Maria, thanks for sharing this fascinating news! I don't know what I find more intriguing, the fact that a place exists where flaking is par for the course among the population, or the fact that people are studying the situation in hopes of helping us all!
The last time I did any net-research on gene therapy was July 97 and the results are contained in the link at the end of this e-mail (from the Archives). The U.S.'s National Psoriasis Foundation has a hand in much of the research going on globally (either as supporter or watchdog) and in their 1998 Annual Report edition of the Bulletin had a good article about genetic research and psoriasis. I would not be surprised to learn the Newfoundland research is tied into an overall project to find our "bad" genes. According to NPF's article, there are at least three possible outcomes of successfully identifying the genetic causes of psoriasis: (a) If it is determined the genes are responsible for a specific protein production imbalance, medication may correct the problem. (b) If precise genes are isolated, so-called "gene therapy" may be invented, through which bad genes are permanently replaced with good ones. Or (c) if a specific virus or infection is discovered that "triggers" the psoriasis-producing behavior of the bad genes, immunizations may be developed. In any of these cases, discovering the "bad" genes is requisite, but only a first step. One would assume the pharmaceutical company investing in research in Newfoundland is banking on their ability to be first to produce a product or products, if (a) or (b), above, are found to be true. Would I mind if they profited thereby? Probably not if I could afford the product.
I can understand arguments suggesting population research (especially on special populations) may be exploitive when sponsored by a pharmaceutical company, but it's unrealistic to assume it would ever get done if no one saw profit at the end of the tunnel. Unfortunately, Sister Theresa-types are the exceptions in our world today, not the rule. We'll see what they do with their data. I'll be irked if they secret it away, especially since they're looking for something as far from a particular product as raw genetic data! Hopefully the dermatologist in the community, or the population's local government, or the subjects themselves, have insisted the data gathered be shared.
Ethics aside, I am fascinated by the existence of this population on the west coast of Newfoundland. Do you suppose these people use the Web? Please do share whatever information you can dig up on the subject. I would love to establish a line of communication with that community. -Ed
From Archives (July, 1997): Gene Therapy: Blue Smoke & Mirrors?