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benefits outweigh the pitfalls. As health research continues to progress, more and more scientific analysis places a greater role on PLR, leading to increased demands for a new social contract to secure conditions for participants. Human participant research not only places subjects into potentially harmful situations, but also can lead to other risks such as exploitation and self-experimentation under non-controlled environments. There is also the risk of biases and distortions "arising from self-reporting and self-collected data". However, at this current state and time, the effects of genetic discrimination are unknown due to the lack of evidence.
29:"It promises to be a vital supplement to standard research: it can focus on conditions that are neglected by standard research, such as rare diseases or side effects, and can draw on a broader range of data and deliver outcomes more rapidly. It can also be a way of realising valuable forms of social interaction and support in cases where members of a community conduct PLR together, for example, patients suffering from the same illness."
101:, a genomics company, to study his own DNA. His results suggested that he was at risk of prostate cancer, and then recommended to his father to receive a medical examination as well. The doctor found a growing tumor in his father's prostate and was able to catch it early. After receiving his results, he posted them on
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The website provides a proof-of-concept mechanism for allowing anyone to be involved in any stage of genomics research. This model allows partnerships to form which can be independent of governments, academia or for-profit organisations and is a way of creating the enabling conditions for anyone to
113:
Though
Greshake acknowledges that there are services that allow people to test their own genes and discover inherent predispositions, they are often expensive, or difficult to access. In 2013, the Food and Drug Administration (FDA) forced company 23andMe to stop marketing their spit-box screening
52:
Since openSNP is an open-sourced social network that is readily available on the internet, there have been questions raised surrounding privacy issues and other risks. Though the sign-up page warns potential users of the record lasting forever, participants must decide for themselves whether the
66:, Sejin Ahn discovered that perhaps the most critical solution that needs to be strengthened is the legislative ban on re-identification and anti-discrimination protection. Ahn explains that these remedies must be addressed and updated in order to protect participants from privacy breaches.
69:
A survey of users of the site found that while most respondents 'were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible'.
57:"Till date no systematic evaluation of the true value of anonymity with respect to the cost of genome information and insight has been assessed in real-life settings. This would require appropriate availability of information including caveats to whole genome assessment and analysis"
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Still, with the rise of open genomic research, privacy protection frameworks need strengthened efforts beyond "traditional legal and organizational safeguards", technical solutions such as data encryption, and mutual understanding. In a study of an article done through the
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Vayena, Effy; Brownsword, Roger; Edwards, Sarah Jane; Greshake, Bastian; Kahn, Jeffrey P; Ladher, Navjoyt; Montgomery, Jonathan; O'Connor, Daniel; O'Neill, Onora; Richards, Martin P; Rid, Annette; Sheehan, Mark; Wicks, Paul; Tasioulas, John (April 2016).
105:, hoping to find other users willing to share their personal genetic makeup. Upon realizing that many people were unwilling or did not include a lot of information that was necessary for scientific research, Greshake created openSNP.
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Greshake hopes that by making openSNP accessible and simple, it will not only attract the public to get interested in their genetic makeup, but also to take it down innovative avenues, such as turning openSNP data into music.
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access, influence and get involved in every stage of the genomics research cycle. The model reflects the value that users of such sites attach to sharing data as 'contributing to the common good of research'.
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tests due to lack of scientific evidence. However, in 2015, the FDA eased their restrictions and stated that carrier screening tests would not have to undergo preliminary review.
41:
variation at a specific location on a strand. Scientists have discovered that there is a correlation between certain SNPs and genetic predispositions such as
Mendelian disease.
109:"Maybe there are people who are interested in publishing their genetic information on the web to make it available, but those people don't have the opportunity,"
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is an open source website where users can share their genetic information. Users upload their genes, including gender, age, eye color, medical history,
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data. With a focus on user patient-led research (PLR), there is potential to redefine the way health research is conducted.
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Haeusermann, Tobias; Greshake, Bastian; Blasimme, Alessandro; Irdam, Darja; Richards, Martin; Vayena, Effy (9 May 2017).
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The transparent open-source code arguably allows greater scrutiny and oversight than similar closed-source projects.
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498:"Whose Genome Is It Anyway?: Re-identification and Privacy Protection in Public and Participatory Genomics"
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Scaria, Vinod (2014). "Personal genomes, participatory genomics and the anonymity-privacy conundrum".
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The code of the project is on GitHub and the CSS is licensed under the Apache 2.0 license.
136:— Fitbit data inclusion feature added, seeing as obesity is correlated with specific SNPs.
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810:"openSNP: Linking Phenotypes to SNPs in openSNP - 2016 - Google Summer of Code Archive"
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345:"Open Window: When Easily Identifiable Genomes and Traits Are in the Public Domain"
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212:"Research led by participants: a new social contract for a new kind of research"
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319:"The Social Network for People Who Want to Upload Their DNA to the Internet"
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614:"Why Open Source Software is More Secure Than Commercial Software"
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The website was founded by German biologist, Bastian
Greshake.
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261:"openSNP–A Crowdsourced Web Resource for Personal Genomics"
642:"This Guy Is the Mark Zuckerberg of Open-source Genetics"
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515:
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160:— openSNP was a participant of Google Summer of Code.
524:"Open sharing of genomic data: Who does it and why?"
148:— Crowdfunding campaign started on Patreon platform.
667:"FDA eases access to at-home DNA screening test"
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447:"Between Openness and Privacy in Genomics"
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760:"openSNP is creating Science | Patreon"
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142:— The website reached 1000 genotypings.
33:The name of the project is inspired by
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64:University of San Diego School of Law
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587:. 28 November 2017. Archived from
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496:Ahn, Sejin (1 September 2015).
35:single nucleotide polymorphism
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689:The Sound Of Bastian Greshake
228:10.1136/medethics-2015-102663
97:sent a vial of his saliva to
549:10.1371/journal.pone.0177158
464:10.1371/journal.pmed.1001937
370:10.1371/journal.pone.0092060
286:10.1371/journal.pone.0089204
814:summerofcode.withgoogle.com
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404:Indian Academy of Sciences
259:Greshake, Bastian (2014).
416:10.1007/s12041-014-0451-3
216:Journal of Medical Ethics
343:Angrist, Misha (2014).
785:"gedankenstuecke/snpr"
130:— openSNP is released.
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445:Vayena, Effy (2016).
502:San Diego Law Review
856:Genealogy databases
735:"Obesity - SNPedia"
594:on 28 November 2017
540:2017PLoSO..1277158H
361:2014PLoSO...992060A
277:2014PLoSO...989204G
851:Genealogy websites
74:Potential benefits
37:(SNP), which is a
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739:snpedia.com
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672:20 November
651:20 November
598:28 November
328:20 November
191:20 November
186:opensnp.org
158:August 2016
845:Categories
165:References
710:"openSNP"
508:(3): 751.
182:"openSNP"
93:In 2012,
623:12 April
568:28486511
528:PLOS ONE
483:26757154
424:25572254
389:24647311
349:PLOS ONE
305:24647222
265:PLOS ONE
246:25825527
140:May 2014
122:Timeline
95:Greshake
764:Patreon
714:openSNP
559:5423632
536:Bibcode
474:4710519
432:2983269
380:3960179
357:Bibcode
296:3960092
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237:4819634
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86:History
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789:GitHub
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428:S2CID
821:2016
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625:2023
618:Mend
600:2017
564:PMID
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242:PMID
193:2016
554:PMC
544:doi
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39:DNA
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Text is available under the Creative Commons Attribution-ShareAlike License. Additional terms may apply.