[DIYbio] Re: "Geneva Statement"

Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction

Trends in Biotechnology SCIENCE & SOCIETY| VOLUME 38, ISSUE 4, P351-354, APRIL 01, 2020

 Published:January 31, 2020 DOI:https://doi.org/10.1016/j.tibtech.2019.12.022

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Heritable Human Genome Editing: Nearing a Critical Juncture

"We contest moves toward reproductive use of human genome modification and affirm the need for broad societal consensus before any decision about whether to proceed is made. We insist on the need for genuine public engagement that is inclusive, global, transparent, informed, open in scope, supported by resources, and given adequate time.

Toward that end, we call for an urgently needed course correction (Box 2) along three dimensions.

First, we need to address and clarify several misrepresentations that have distorted public understanding of heritable human genome modification.

Second, we must reorient the conversation by foregrounding societal consequences and undertaking a thorough analysis of threats to equality.

Third, we need criteria for 'public empowerment': robust public engagement that promotes democratic governance through shared decision-making [4].

Perhaps the most fundamental and widespread misrepresentation is that heritable human genome editing is needed to treat or prevent serious genetic diseases. Deliberations about heritable human genome editing should hence acknowledge these basic points:

• Heritable human genome editing would not treat, cure, or prevent disease in any existing person. Instead, it would modify the genes of future children and generations through the intentional creation of embryos with altered genomes. This fact makes it categorically distinct from somatic gene therapies. Heritable human genome editing should be understood not as a medical intervention, but as a way to satisfy parental desires for genetically related children or for children with specific genetic traits.

• Modifying genes in early embryos, gametes, or gamete precursor cells could produce unanticipated biological effects in resulting children and in their offspring, creating harm rather than preventing it. Heritable human genome editing would also require and normalize the use of in vitro fertilization (IVF), exposing healthy women to significant health burdens [4].

• Prospective parents at risk of transmitting a genetic condition already have several options to avoid doing so, should they find them acceptable. For example, prospective parents may seek to have unaffected children via third-party gametes or adoption.

• In nearly every case, prospective parents at risk of transmitting a genetic condition who wish to avoid doing so and to have genetically related children can accomplish this with the existing embryo screening technique preimplantation genetic diagnosis (PGD) [5]. While PGD also raises troubling ethical questions about what kind of lives we welcome into the world, modifying or introducing traits through genome editing would vastly intensify these concerns. Genome editing cannot be considered an alternative to PGD, because PGD would remain a necessary step in any embryo editing procedure.

Deliberations about heritable human genome modification must seriously investigate the implications of social and historical dynamics such as these:

• Competitive pressures to 'get ahead', coupled with commercial incentives in the fertility industry (especially where it operates in the private sector), could foster the adoption of heritable human genome editing by those able to afford it. Unequal access to perceived genetic 'upgrades' could then exacerbate the recent dramatic rise in socioeconomic inequality.

• Racism and xenophobia are resurgent around the world, fueled by discredited scientific and popular assumptions about biological differences among racially categorized populations. Eugenic thinking, which aims to 'improve' humanity through genetic and reproductive technologies and practices, persists in popular discourse and could be reinvigorated by the availability of heritable human genome editingiv [6,7]. These pernicious ideas increase stigma and discrimination against those considered genetically disadvantaged, including disabled people and communities, and undermine the fundamental equality of all people.

• Outcomes in related biotechnological spheres provide examples of the likely trajectory of heritable human genome editing if commercialized. These include the promotion of social sex selection by fertility clinics and of unproven and risky 'treatments' by commercial stem cell clinics.

Public engagement and empowerment are likely to reveal additional concerns that have not yet surfaced, particularly if we commit to including and listening to a broad range of voices and perspectives.

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On Monday, December 30, 2019 at 9:31:27 AM UTC-8, Jonathan Cline wrote:

He Jiankui and colleagues found guilty, He gets 3 years in prison and pays a mediocre fine.

Chinese Scientist Who Genetically Edited Babies Gets 3 Years in Prison

He Jiankui's work was also carried out on a third infant, according to China's state media, in a new disclosure that is likely to add to the global uproar over such experiments.

By Sui-Lee Wee

Dec. 30, 2019

Updated 10:02 a.m. ET https://www.nytimes.com/2019/12/30/business/china-scientist-genetic-baby-prison.html

BEIJING — A court in China on Monday sentenced He Jiankui, the researcher who shocked the global scientific community when he claimed that he had created the world's first genetically edited babies, to three years in prison for carrying out "illegal medical practices."

On Monday, China's state media said his work had resulted in a third genetically edited baby, who had been previously undisclosed.

Dr. He pleaded guilty and was also fined $430,000, according to Xinhua. In a brief trial, the court also handed down prison sentences to two other scientists who it said had "conspired" with him: Zhang Renli, who was sentenced to two years in prison, and Qin Jinzhou, who got a suspended sentence of one and a half years.

The court held that the defendants, "in the pursuit of fame and profit, deliberately violated the relevant national regulations on scientific and medical research and crossed the bottom line on scientific and medical ethics," Xinhua said.

American scientists who knew of Dr. He's plans are now under scrutiny. Dr. He's former academic adviser, Stephen Quake, a star Stanford bioengineer and inventor, is facing a Stanford investigation into his interaction with his former student. Rice University has been investigating Michael Deem, Dr. He's Ph.D. adviser, because of allegations that he was actively involved in the project.

Dr. Quake has said he had nothing to do with Dr. He's work. Mr. Deem has said he was present for parts of Dr. He's research but his lawyers have denied that he was actively involved.