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Association of Health Care Journalists Meeting Features Hastings Center Experts

The Hastings Center teamed up with the Association of Health Care Journalists (AHCJ) to create three sessions on gene editing for its annual meeting in Orlando on April 20. In addition, Hastings Center research scholar Nancy Berlinger was a panelist on a session concerning health care for refugees and undocumented immigrants, which took place on April 22.

AHCJ is a professional association of 1,500 journalists who cover health care. The gene editing sessions drew on expertise from The Hastings Center’s project on gene editing and human flourishing, which is supported by the John Templeton Foundation. A new gene editing technique, CRISPR-Cas9, has radically simplified our ability to change genomes and, thus, holds enormous potential for improving human health. But it also raises profound ethical questions, especially if it is used to alter the human germline – sperm, eggs, and embryos – and make changes that can be passed down from one generation to the next, or to enhance human traits.

The first session was a primer on gene editing, moderated by Dina Fine Maron, an editor at Scientific American. Chao-Ting Wu, a geneticist at Harvard, began with an overview of the science and then identified the gene editing therapies currently being tested – one for lung cancer and another for a form of blindness — and others that are in the works. “Germline gene editing therapy is on the horizon,” she said.

Next, Josephine Johnston, The Hastings Center’s director of research, discussed the concerns that human gene editing raises. Some of those concerns are about its safety and others are about its ethical implications. Some of the ethical concerns are about justice, such as, would everyone have access to potential life-saving therapies, or would the wealthy benefit disproportionately? Other ethical questions center on the use of gene editing to enhance human traits rather than to treat or prevent a condition, and to change the human genome and thus “to purposefully alter human evolution.”

Journalists were tweeting throughout the session.

The second session was devoted to parenting in the genomic age, covering prenatal genetic testing and diagnosis and the use of mitochondrial DNA replacement, an in vitro fertilization technique that uses genetic material from the prospective mother and father and from another woman to prevent transmission of mitochondrial diseases. Paul Raeburn, an independent journalist who served as moderator, began by asking journalists to stop calling the offspring of this technology “three-parent babies.” “It sounds freakish,” he said. “But there’s nothing freakish about it.”

Eli Adashi, a reproductive endocrinologist at Brown, began with an overview of mitochondrial DNA replacement and the prospects of using gene editing on human embryos, which would be an example of editing the human germline and, therefore, of human intervention with evolution.

Johnston envisioned a world in which it becomes routine for parents to have their babies’ genomes sequenced. “Will gene editing your baby be mandatory? Will failure to do so constitute neglect?” These questions lead to the overarching question posed to parents by genome testing and editing: Should parents accept children as gifts or should they aim to control their children’s traits with an eye toward social benefits?

Teresa Blankmeyer Burke, an associate professor of philosophy at Gallaudet University, explored the implications more deeply with regard to genetic screening for some kinds of deafness. Burke, who is deaf and who studies issues concerning deafness and disability, gave the first half of her presentation in sign language, with the aid of interpreters, and the second half in verbal language. She challenged parents to consider why they would not want a deaf child and then gave several reasons for parents to rethink that position, including the benefits of biodiversity and “linguistic diversity.”

Closing the session, Paul Raeburn said, “I heard at least half a dozen story ideas.”

In the third gene editing session, Hastings Center research scholar Gregory Kaebnick, discussed various means of genetically modifying disease-carrying pests such as mosquitoes to prevent transmission of malaria. Leading technologies include gene drives, which make genetic changes to an organism in a way that’s designed to spread the changes to all of the organism’s offspring, and eventually throughout the organism’s entire population. For example, researchers could try to develop a gene drive in Zika-carrying mosquitoes that’s biased against females – an “x-shredder” – which would leave mainly males, which don’t bite, and eventually cause the species to become extinct.

Field tests of genetically modified mosquitoes have taken place in South America and are pending in the Florida Keys, where the tests were approved by a voter referendum last November. But another area in Florida voted down field testing. Kaebnick emphasized the importance of public engagement in research on gene drives, echoing a recommendation of the National Academy of Sciences report issued last year on the responsible use of gene drives. “The report concluded that values should guide research on gene drives at every step,” said Kaebnick, who was on the committee that produced the report. “Policy should not be based on facts alone. It needs also to be based on values.”

Kaebnick, and the moderator, Bonnie Rochman, an independent journalist, concluded by discussing the media’s role in supporting public engagement.

An AHCJ panel on health challenges for refugees and undocumented immigrants included Hastings Center research scholar Nancy Berlinger, co-director of the Center’s undocumented patients project. The panel gave a baseline understanding of the intersection of two fragmented systems: health care and immigration. Berlinger discussed how changes to health care and immigration policy might affect the more than 11 million undocumented immigrants and 3 million refugees.