Patients with genetic disorders and members of the public, both in the United States and around the world, have diverse views about whether germline genome editing should be used to prevent or treat genetic disorders.
Patient and Public Perspectives
Patients, patient advocates, and families of patients with genetic disorders have diverse views on whether germline genome editing should be used to prevent or treat genetic disorders. Some patients suffering from conditions such as Huntington disease believe strongly that it should be used to prevent people from getting genetic diseases, especially ones that do not currently have treatment options. Others, such as those in the deaf community, do not consider their condition to be a disability. They worry that if human genome editing becomes widespread, persons born with genetic conditions would be less likely to be accepted in society. Many communities generally question the idea that eliminating genetic conditions will improve lives, especially given that those with disabilities often report a high quality of life.1
The Pew Research Center, a nonpartisan group that polls the public on a variety of topics, conducted a survey to understand the public's feelings about gene editing for newborns that would give them a reduced risk of serious diseases during their lives. The survey noted that any change made could be passed down to future generations, which could eventually change the genetic characteristics of the population. Though they found some enthusiasm among the public about gene editing, they also found that about two-thirds of U.S. adults have worries about the technology.
Pew also found:
- The public is about evenly divided on whether they would use gene editing for their own child
- The public is about evenly divided on whether gene editing "crosses a line" and constitutes "meddling with nature," or is like "other ways we try to better ourselves"
- There are religious divides in opinions about gene editing
- Those that had prior knowledge about gene editing were more inclined to want it for their own child in the given scenario.
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United States Perspectives
While the United States does not have an explicit ban on germline genome editing, it does have restrictions through legislation and NIH policy. The Appropriations Act of 2016, passed in December 2015, prohibits the Food and Drug Administration (FDA) from reviewing research that involves the creation or germline modification of embryos. The Dickey-Wicker amendment, which has been included in appropriation bills since 1996, prohibits the use of federal funds for research that involves the creation or destruction of embryos.2 Lastly, NIH has guidelines stipulating that the NIH Recombinant DNA Advisory Committee will not consider proposals that involve germline alteration.
In April 2015, NIH released a statement to reiterate that it will not fund any use of gene editing in human embryos due to ethical and safety concerns. The statement noted that editing the germline "has been viewed almost universally as a line that should not be crossed" and that there are not currently "compelling medical applications justifying the use of CRISPR/Cas9 in embryos."3
In July 2017, using non-federal funding, scientists at Oregon Health and Science University in Portland successfully edited the genes of human embryos, avoiding many of the technical errors that similar research has faced. The embryos were only allowed to develop for a few days. This was the first such study to be carried out in the United States.4
In April 2015, Chinese researchers led by Junjiu Huang and Sun Yat-sen of University in Guangzhou used CRISPR on nonviable embryos from local fertility clinics in an effort to modify a gene that can cause the blood disorder beta thalassemia. The researchers only allowed the embryos (those that could not result in a live birth) to grow to about eight cells each.5 Even before this paper was published, researchers discussed rumors that it was taking place, and debates about the ethical implications increased. Some investigators called for a moratorium on such research until broader discussions about the ethics could take place. 6
The international landscape of laws and regulations that govern germline genome editing is varied, but one 2014 analysis showed that of 14 countries that allow research with embryonic stem cells, 13 ban germline modification.7 An expanded survey showed that of 39 countries, 29 ban germline modification and those that do not are ambiguous on the topic. In some cases, countries have stated that they will reconsider if genome editing is deemed safe. Some countries do allow preclinical research with embryos leftover from fertility treatments after appropriate review.
In the United Kingdom, it is illegal to modify the genomes of embryos used for reproduction; however, in February 2015, the UK Human Fertilisation and Embryology Authority (HFEA), a national regulatory board for fertility research, became the first to approve an application to edit the genomes of human embryos for research in developmental biology.8
Because of emerging concerns about genome editing, and because the impacts of genome editing research are of international concern, the National Academies of Sciences, Engineering, and Medicine (NASEM), in collaboration with the British Royal Society and the Chinese Academy of Sciences, hosted an international summit in December 2015 to discuss concerns. See "What's happening in genome editing right now?" for more information on the summit.
 H.R.2029 - 114th Congress (2015-2016): Consolidated Appropriations Act, 2016, (2015).
 Check Hayden, E. (2016). Should you edit your children's genes? Nature News, 530(7591), 402. doi:10.1038/530402a
 Collins, F. S. (2015). Statement on NIH funding of research using gene-editing technologies in human embryos: https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-nih-funding-research-using-gene-editing-technologies-human-embryos
 Servick, K. (2017). First U.S. team to gene-edit human embryos revealed. Science News. doi: 10.1126/science.aan7170
 Cyranoski, D., & Reardon, S. (2017). Chinese scientists genetically modify human embryos. Nature News. doi:10.1038/nature.2015.17378
 Cyranoski, D. (2017). Scientists sound alarm over DNA editing of human embryos. Nature News. doi:10.1038/nature.2015.17110
 Araki, M., & Ishii, T. (2014). International regulatory landscape and integration of corrective genome editing into in vitro fertilization. Reprod Biol Endocrinol, 12, 108. doi:10.1186/1477-7827-12-108
 Callaway, E. (2016). UK scientists gain licence to edit genes in human embryos. Nature News, 530(7588), 18. doi:10.1038/nature.2016.19270
Last updated: August 3, 2017