Rep. Jeff Fortenberry (R-NE), the ranking member of the subcommittee, spoke at the Tuesday meeting in favor of maintaining the prohibition on embryonic gene editing. Fortenberry said that human genetic experimentation is loaded with ethical questions largely unaddressed by researchers.
“If we cede this framework of science and ethics to maverick bioengineers who are detached from larger societal considerations, the risks of harm are real, and we will divert these resources away from real, viable alternatives,” said Fortenberry.
The Nebraska congressman said the issue is particularly close to home for him, as one of his own children is the beneficiary of intense medical interventions that have significantly lengthened her life.
Fortenberry explained that his daughter Kathryn was born with multiple congenital heart defects, and effectively lacked an aorta. At the time she was born, Fortenberry and his wife researched possible adult stem-cell therapies that could potentially cure her condition, before realizing “that particular innovation was premature” and would not be effective.
Instead, he said, their daughter had multiple surgeries and implants, and is now expected to have a full and healthy life, noting that had she been born 20 years earlier, said she would have not been expected to live past the age of 30.
“It was through this innovation and advancement in science that made that life extension possible for her,” said Fortenberry, adding “When we search passionately for answers, and align them with effective science, reason, and ethics, we have a holistic approach to compassionate care.”
Earlier in the hearing, Sanford Bishop had raised a doctor’s use of controversial mitochondrial replacement therapy in treating a child who with a mitochondrial illness. Fortenberry said the example showed the ethical problems of using untested science as medicine and accused the doctor of “skirting U.S. law.”
“[The doctor’s] own findings are showing that the disease is still present in that child. The child is also supposed to be tracked his entire life and the risk to the child may not be known for decades,” said Fortenberry.
Fortenberry quoted a comment made earlier this year by Dr. Fancis Collins, the Obama-appointed head of the National Institutes of Health. Collins has also expressed concern about the efficacy and ethics of human germline editing.
“Given the lack of compelling medical need, the safety concerns, and the profound societal and philosophical issues--NIH strongly agrees that an international moratorium on reproductive uses of human germline gene editing should be put into effect,” said Collins in March.
Fortenberry suggested that instead of gene editing clinical trials, that “we can innovate in order to authentically alleviate human suffering.”
In a voice vote on Tuesday, all members except Rep. Debbie Wasserman-Schultz (D-FL) approved the amendment, adding the prohibition back into the 2020 appropriations bill.
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