Disir
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- Sep 30, 2011
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Over the last several years, parents from across the country have appeared on television and news outlets to raise money to develop treatments for their children with rare genetic disorders.
Many of these families, including one from Kansas City, Missouri, have pinned their hopes on one Texas researcher, Dr. Steven Gray of the University of Texas Southwestern Medical Center in Dallas, who claims to be on the verge of treating a number of rare conditions. They've raised millions of dollars to fund his research, although breakthroughs haven't happened to the extent many had hoped.
While gene therapy holds great promise, the growing trend of family-funded research concerns some medical ethicists, who say that suggestions to parents that treatments may be imminent can raise thorny ethical issues.
“These are parents. They are desperate.” says Mayo Clinic bioethicist Megan Allyse. “They are willing to try almost anything. They are in a pretty vulnerable position for somebody to come along and say, ‘Give me your money, and I can make this better.’”
news.stlpublicradio.org
I understand that parents are walking targets for scams but I'm pretty sure that if the "professionals" were only allowed to do it then nothing gets done. I think that it's time to look at ways to offer incentives for cures.
Many of these families, including one from Kansas City, Missouri, have pinned their hopes on one Texas researcher, Dr. Steven Gray of the University of Texas Southwestern Medical Center in Dallas, who claims to be on the verge of treating a number of rare conditions. They've raised millions of dollars to fund his research, although breakthroughs haven't happened to the extent many had hoped.
While gene therapy holds great promise, the growing trend of family-funded research concerns some medical ethicists, who say that suggestions to parents that treatments may be imminent can raise thorny ethical issues.
“These are parents. They are desperate.” says Mayo Clinic bioethicist Megan Allyse. “They are willing to try almost anything. They are in a pretty vulnerable position for somebody to come along and say, ‘Give me your money, and I can make this better.’”
These Families Raised Millions To Fund Treatment For Their Kids' Genetic Disorders. It Hasn't Happened
The growing trend of family-funded research concerns some medical ethicists, who say that suggestions to parents that treatments may be imminent can raise thorny ethical issues.
news.stlpublicradio.org
I understand that parents are walking targets for scams but I'm pretty sure that if the "professionals" were only allowed to do it then nothing gets done. I think that it's time to look at ways to offer incentives for cures.
