Editing DNA sequencing (section)

== Ethical issues ==
{{Expand section|date=May 2015}}
{{Further|Bioethics}}
Human genetics have been included within the field of [[bioethics]] since the early 1970s<ref name="ethics-murray">{{cite journal | vauthors = Murray TH | title = Ethical issues in human genome research | journal = FASEB Journal | volume = 5 | issue = 1 | pages = 55–60 | date = January 1991 | pmid = 1825074 | doi = 10.1096/fasebj.5.1.1825074 | doi-access = free | s2cid = 20009748 }}</ref> and the growth in the use of DNA sequencing (particularly high-throughput sequencing) has introduced a number of ethical issues. One key issue is the ownership of an individual's DNA and the data produced when that DNA is sequenced.<ref name="usd1000-genome-ethics">{{cite journal|vauthors=Robertson JA|date=August 2003|title=The $1000 genome: ethical and legal issues in whole genome sequencing of individuals|journal=The American Journal of Bioethics|volume=3|issue=3|pages=W–IF1|doi=10.1162/152651603322874762|pmid=14735880|s2cid=15357657}}<!--|access-date=20 May 2015--></ref> Regarding the DNA molecule itself, the leading legal case on this topic, ''[[Moore v. Regents of the University of California]]'' (1990) ruled that individuals have no property rights to discarded cells or any profits made using these cells (for instance, as a patented [[cell line]]). However, individuals have a right to informed consent regarding removal and use of cells. Regarding the data produced through DNA sequencing, ''Moore'' gives the individual no rights to the information derived from their DNA.<ref name="usd1000-genome-ethics" />

As DNA sequencing becomes more widespread, the storage, security and sharing of genomic data has also become more important.<ref name="usd1000-genome-ethics" /><ref name="guardian-ethics">{{cite news|last1=Henderson|first1=Mark|title=Human genome sequencing: the real ethical dilemmas|url=https://www.theguardian.com/science/2013/sep/09/genetics-ethics-human-gene-sequencing|newspaper=The Guardian|access-date=20 May 2015|date=2013-09-09}}</ref> For instance, one concern is that insurers may use an individual's genomic data to modify their quote, depending on the perceived future health of the individual based on their DNA.<ref name="guardian-ethics" /><ref name="ny-times-insurance-ethics">{{cite news|last1=Harmon|first1=Amy|title=Insurance Fears Lead Many to Shun DNA Tests|url=https://www.nytimes.com/2008/02/24/health/24dna.html?pagewanted=all&_r=0|website=The New York Times|access-date=20 May 2015|date=24 February 2008}}</ref> In May 2008, the [[Genetic Information Nondiscrimination Act]] (GINA) was signed in the United States, prohibiting discrimination on the basis of genetic information with respect to health insurance and employment.<ref name="OMB support">[http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/SAPonHR493.pdf Statement of Administration policy], Executive Office of the President, Office of Management and Budget, 27 April 2007</ref><ref name="Signing">{{cite news |url=http://www.genome.gov/27026050|title=President Bush Signs the Genetic Information Nondiscrimination Act of 2008|author=National Human Genome Research Institute|date=21 May 2008| access-date=17 February 2014}}</ref> In 2012, the US [[Presidential Commission for the Study of Bioethical Issues]] reported that existing privacy legislation for DNA sequencing data such as GINA and the [[Health Insurance Portability and Accountability Act]] were insufficient, noting that whole-genome sequencing data was particularly sensitive, as it could be used to identify not only the individual from which the data was created, but also their relatives.<ref name="nature-ethics">{{cite news |last1=Baker |first1=Monya |title=US ethics panel reports on DNA sequencing and privacy |url=https://blogs.nature.com/news/2012/10/us-ethics-panel-reports-on-dna-sequencing-and-privacy.html |work=Nature News Blog |date=11 October 2012 }}</ref><ref name="privacy-progress-report">{{cite web|title=Privacy and Progress in Whole Genome Sequencing|url=http://bioethics.gov/sites/default/files/PrivacyProgress508_1.pdf|publisher=Presidential Commission for the Study of Bioethical Issues|access-date=20 May 2015|archive-url=https://web.archive.org/web/20150612001900/http://bioethics.gov/sites/default/files/PrivacyProgress508_1.pdf|archive-date=12 June 2015|url-status=dead}}</ref>

In most of the United States, DNA that is "abandoned", such as that found on a licked stamp or envelope, coffee cup, cigarette, chewing gum, household trash, or hair that has fallen on a public sidewalk, may legally be collected and sequenced by anyone, including the police, private investigators, political opponents, or people involved in paternity disputes. As of 2013, eleven states have laws that can be interpreted to prohibit "DNA theft".<ref>{{Cite web |last1=Hartnett |first1=Kevin |date=2013-05-12 |title=The DNA in your garbage: up for grabs |url=https://www.bostonglobe.com/ideas/2013/05/11/the-dna-your-garbage-for-grabs/sU12MtVLkoypL1qu2iF6IL/story.html |url-access=subscription |access-date=2023-01-02 |website=The Boston Globe |language=en-US}}</ref>

Ethical issues have also been raised by the increasing use of genetic variation screening, both in newborns, and in adults by companies such as [[23andMe]].<ref name="ethics-newborns">{{cite journal | vauthors = Goldenberg AJ, Sharp RR | title = The ethical hazards and programmatic challenges of genomic newborn screening | journal = JAMA | volume = 307 | issue = 5 | pages = 461–2 | date = February 2012 | pmid = 22298675 | pmc = 3868436 | doi = 10.1001/jama.2012.68 }}</ref><ref name="ethics-hughes">{{cite web|last1=Hughes|first1=Virginia|title=It's Time To Stop Obsessing About the Dangers of Genetic Information|url=http://www.slate.com/articles/health_and_science/medical_examiner/2013/01/ethics_of_genetic_information_whole_genome_sequencing_is_here_and_we_need.html|website=Slate Magazine|access-date=22 May 2015|date=2013-01-07}}</ref> It has been asserted that screening for genetic variations can be harmful, increasing [[anxiety]] in individuals who have been found to have an increased risk of disease.<ref name="ethics-bloss">{{cite journal | vauthors = Bloss CS, Schork NJ, Topol EJ | title = Effect of direct-to-consumer genomewide profiling to assess disease risk | journal = The New England Journal of Medicine | volume = 364 | issue = 6 | pages = 524–34 | date = February 2011 | pmid = 21226570 | pmc = 3786730 | doi = 10.1056/NEJMoa1011893 }}</ref> For example, in one case noted in ''[[Time (magazine)|Time]]'', doctors screening an ill baby for genetic variants chose not to inform the parents of an unrelated variant linked to [[dementia]] due to the harm it would cause to the parents.<ref name="ethics-time">{{cite magazine|last1=Rochman|first1=Bonnie|title=What Your Doctor Isn't Telling You About Your DNA|url=https://healthland.time.com/2012/10/25/what-your-doctor-isnt-telling-you-about-your-dna/|magazine=[[Time (magazine)|Time]]|access-date=22 May 2015|date=25 October 2012}}</ref> However, a 2011 study in ''[[The New England Journal of Medicine]]'' has shown that individuals undergoing disease risk profiling did not show increased levels of anxiety.<ref name="ethics-bloss" /> Also, the development of Next Generation sequencing technologies such as Nanopore based sequencing has also raised further ethical concerns.<ref>{{cite journal |last1=Sajeer P |first1=Muhammad |title=Disruptive technology: Exploring the ethical, legal, political, and societal implications of nanopore sequencing technology |journal=EMBO Reports |date=4 May 2023 |volume=24 |issue=5 |pages=e56619 |doi=10.15252/embr.202256619 |pmid=36988424 |pmc=10157308 |s2cid=257803254 }}</ref>