Human germline engineering
For safety, ethical, and social reasons, the scientific community and the public have concluded that germline editing for reproduction is inappropriate.
In November 2018, researcher He Jiankui created the first human babies from genetically edited embryos, known by their pseudonyms, Lulu and Nana.
In May 2019, lawyers in China reported that regulations had been drafted that anyone manipulating the human genome would be held responsible for any related adverse consequences.
Human germline engineering has two potential applications: prevent genetic disorders from passing to descendants, and to modify traits such as height that are not disease related.
Eugenic modifications to humans yield "designer babies", with deliberately-selected traits, possibly extending to its entire genome.
[9] In a 2019 animal study with Liang Guang small spotted pigs, precise editing of the myostatin signal peptide yielded increased muscle mass.
[14] In April 2015, a research team published an unsuccessful experiment in which they used CRISPR to edit a gene that is associated with blood disease in non-living human embryos.
On March 13, 2019 researchers Eric Lander, Françoise Baylis, Feng Zhang, Emmanuelle Charpentier, Paul Bergfrom and others called for a framework that did not foreclose any outcome, but included a voluntary pledge and a call for a coordinating body to monitor the HGE moratorium with an attempt to reach social consensus before furthering research.
He Jiankui, working at the Southern University of Science and Technology (SUSTech) in Shenzhen, China, started a project to help people with HIV-related fertility problems, specifically involving HIV-positive fathers and HIV-negative mothers.
The subjects were offered standard in vitro fertilisation services and in addition, use of CRISPR gene editing (CRISPR/Cas9), a technology for modifying DNA.
[34] On 30 December 2019, a Chinese district court found He Jiankui guilty of illegal practice of medicine, sentencing him to three years in prison with a fine of 3 million yuan.
[35][36] Zhang Renli and Qin Jinzhou received an 18-month prison sentence and a 500,000-yuan fine, and were banned from working in assisted reproductive technology for life.
[37] As early in the history of biotechnology as 1990, there have been researchers opposed to attempts to modify the human germline using these new tools,[50] and such concerns have continued as technology progressed.
"[57] The American Medical Association's Council on Ethical and Judicial Affairs stated that "genetic interventions to enhance traits should be considered permissible only in severely restricted situations: (1) clear and meaningful benefits to the fetus or child; (2) no trade-off with other characteristics or traits; and (3) equal access to the genetic technology, irrespective of income or other socioeconomic characteristics.
[60][61][62] For parents, genetic engineering could be seen as another child enhancement technique to add to diet, exercise, education, training, cosmetics, and plastic surgery.
However, there are anecdotal reports of children and adults who disagree with the medical decisions made by a parent during pregnancy or early childhood, such as when death was a possible outcome.
[66] Other researchers and philosophers have noted that the issue of the lack of prior consent applies as well to individuals born via traditional sexual reproduction.
According to Pearce, “the question of [human germline engineering] comes down to an analysis of risk-reward ratios – and our basic ethical values, themselves shaped by our evolutionary past.”[69] Bioethicist Julian Savulescu in turn proposes the principle of procreative beneficence, according to which “couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information”.
Such debate ranges from the ethical obligation to use safe and efficient technology to prevent disease to seeing some actual benefit in genetic disabilities.
[citation needed] Another ethical concern pertains to potential unequal distribution of benefits, even in the case of genome editing being inexpensive.
[79] There is distinction in some country policies, including but not limited to official regulation and legislation, between human germline engineering for reproductive use and for laboratory research.
[3] Countries that explicitly prohibit any use of human germline engineering for reproduction are: Albania, Argentina, Australia, Austria, Bahrain, Belarus, Benin, Bosnia and Herzegovina, Brazil, Bulgaria, Burundi, Canada, Chile, China, Congo, Costa Rica, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Georgia, Germany, Greece, Hungary, Iceland, India, Iran, Ireland, Israel, Japan, Kenya, Latvia, Lebanon, Lithuania, Malaysia, Malta, Mexico, Moldova, Montenegro, Netherlands, New Zealand, Nigeria, North Macedonia, Norway, Oman, Pakistan, Poland, Portugal, Qatar, Romania, Russia, San Marino, Saudi Arabia, Serbia, Slovakia, Slovenia, South Korea, Spain, Sweden, Switzerland, Thailand, Tunisia, Turkey, the United Kingdom, the United States, Uruguay, and the Vatican[3] Countries that explicitly prohibit (with exceptions) the use of human germline engineering for reproduction are: Belgium, Colombia, Italy, Panama, and the United Arab Emirates[3] Laboratory research use involves human germline engineering restricted to in vitro use, where edited cells will not be implanted to be born.
[3] Countries that explicitly prohibit any use of germline engineering for in vitro use are: Albania, Austria, Bahrain, Belarus, Brazil, Canada, Costa Rica, Croatia, Germany, Greece, Lebanon, Malaysia, Malta, Pakistan, Saudi Arabia, Sweden, Switzerland, Uruguay, and the Vatican[3] Countries that explicitly prohibit (with exceptions) the use of germline engineering for in vitro use are: Colombia, Finland, Italy, and Panama[3] Countries that explicitly permit the use of germline engineering for in vitro use are: Burundi, China, Congo, India, Iran, Ireland, Japan, Norway, Thailand, the United Kingdom, and the United States[3]
