Editing Informed consent (section)

==Within research==

===Medicine===
Informed consent is part of ethical [[clinical research]] as well, in which a human subject voluntarily confirms his or her willingness to participate in a particular [[clinical trial]], after having been informed of all aspects of the trial that are relevant to the subject's decision to participate. Informed consent is documented by means of a written, signed, and dated informed consent form.<ref>{{cite web|url=https://www.ich.org/fileadmin/Public_Web_Site/ICH_Products/Guidelines/Efficacy/E6/E6_R1_Guideline.pdf |title=Guideline For Good Clinical Practice |access-date=2018-09-24}}</ref>
In [[medical research]], the [[Nuremberg Code]] set a base international standard in 1947, in response to the ethical violation in the [[Holocaust]]. Standards continued to develop.  Nowadays, medical research is overseen by an [[ethics committee]] that also oversees the informed consent process.

===Social sciences===
As the medical guidelines established in the Nuremberg Code were imported into the ethical guidelines for the [[social science]]s, informed consent became a common part of the research procedure.<ref>{{cite book |last=Homan |first=R. |year=1991 |title=The Ethics of Social Research |location=London; New York |publisher=Longman |isbn=978-0-582-05879-8 }}</ref> However, while informed consent is the default in medical settings, it is not always required in the social sciences. Here, firstly, research often involves low or no risk for participants, unlike in many medical experiments. Secondly, the mere knowledge that they participate in a study can cause people to alter their behavior, as in the [[Hawthorne Effect]]: "In the typical lab experiment, subjects enter an environment in which they are keenly aware that their behavior is being monitored, recorded, and subsequently scrutinized."<ref>{{cite journal |last1=Levitt |first1=S. D. |last2=List |first2=J. A. |year=2007 |title=What Do Laboratory Experiments Measuring Social Preferences Reveal about the Real World? |journal=[[Journal of Economic Perspectives]] |volume=21 |issue=2 |pages=153–174 |doi= 10.1257/jep.21.2.153|jstor=30033722 |s2cid=26940779 |url=http://s3.amazonaws.com/fieldexperiments-papers2/papers/00480.pdf }}</ref>{{rp|168}}
In such cases, seeking informed consent directly interferes with the ability to conduct the research, because the very act of revealing that a study is being conducted is likely to alter the behavior studied. Author J.A. List explains the potential dilemma that can result: "if one were interested in exploring whether, and to what extent, race or gender influences the prices that buyers pay for used cars, it would be difficult to measure accurately the degree of discrimination among used car dealers who know that they are taking part in an experiment."<ref>{{cite journal |last1=List |first1=J. A. |year=2008 |title=Informed Consent in Social Science |journal=[[Science (journal)|Science]] |volume=322 |issue=5902 |page=672 |doi=10.1126/science.322.5902.672a |pmid=18974330 |last2=List |first2=J. A. |citeseerx=10.1.1.418.1731 |s2cid=153720217 }}</ref> In a case where such interference is likely, and after careful consideration, a researcher may forgo the informed consent process. This may be done after the researcher(s) and an [[Ethics committee|Ethics Committee]] and/or [[Institutional Review Board]] (IRB) weigh the risk to study participants against the benefits to society and whether participants participate voluntarily and are to be treated fairly.<ref>{{cite journal |last1=Levitt |first1=S. D. |last2=List |first2=J. A. |year=2009 |title=Field experiments in economics: The past, the present, and the future |journal=[[European Economic Review]] |volume=53 |issue=1 |pages=1–18 |doi=10.1016/j.euroecorev.2008.12.001 |s2cid=2977019 |url=http://s3.amazonaws.com/fieldexperiments-papers2/papers/00079.pdf }}</ref>

The birth of new online media, such as social media, has complicated the idea of informed consent. In an online environment people pay little attention to [[Terms of Use]] agreements and can subject themselves to research without thorough knowledge. This issue came to the public light following a study conducted by [[Facebook]] in 2014, and published by that company and [[Cornell University]].<ref>{{cite journal|last1=Kramer|first1=Adam|last2=Guillory|first2=Jaime|last3=Jeffrey|first3=Hancock|title=Experimental evidence of massive-scale emotional contagion through social networks|journal=PNAS|date=2014|volume=111|issue=24|doi=10.1073/pnas.1320040111|pmid=24889601|pages=8788–90|pmc=4066473|bibcode=2014PNAS..111.8788K|doi-access=free}}</ref> Facebook conducted a study without consulting an Ethics Committee or IRB where they altered the Facebook News Feeds of roughly 700,000 users to reduce either the amount of positive or negative posts they saw for a week. The study then analyzed if the users' status updates changed during the different conditions. The study was published in the [[Proceedings of the National Academy of Sciences]]. The lack of informed consent led to outrage among many researchers and users.<ref>{{cite news|last1=LANIER|first1=Jaron|title=Should Facebook Manipulate Users?|url=https://www.nytimes.com/2014/07/01/opinion/jaron-lanier-on-lack-of-transparency-in-facebook-study.html|website=The New York Times|date=30 June 2014 |access-date=April 26, 2015}}</ref> Many believed that by potentially altering the mood of users by altering what posts they see, Facebook put at-risk individuals at higher dangers for depression and suicide. However, supporters of Facebook claim that Facebook details that they have the right to use information for research in their terms of use.<ref>{{cite web|last1=Boyd|first1=Danah|title=What does the Facebook experiment teach us?|url=http://socialmediacollective.org/2014/07/01/facebook-experiment/|website=Social Media Collective Research Blog|date=July 2014|access-date=April 26, 2015}}</ref> Others say the experiment is just a part of Facebook's current work, which alters News Feeds algorithms continually to keep people interested and coming back to the site. Others pointed out that this specific study is not unique but rather news organizations constantly try out different headlines using [[A/B testing|algorithms]] to elicit emotions and garner clicks or Facebook shares.<ref>{{cite web|last1=Watts|first1=Duncan|title=Stop complaining about the Facebook study. It's a golden age for research|url=https://www.theguardian.com/commentisfree/2014/jul/07/facebook-study-science-experiment-research|website=The Guardian|date=7 July 2014|access-date=April 26, 2015}}</ref> They say this Facebook study is no different from things people already accept. Still, others say that Facebook broke the law when conducting the experiment on users that did not give informed consent.<ref>{{cite web|last1=Grimmelmann|first1=James|title=Illegal, Immoral, and Mood-Altering How Facebook and OkCupid Broke the Law When They Experimented on Users|url=https://medium.com/@JamesGrimmelmann/illegal-unethical-and-mood-altering-8b93af772688|website=Medium|date=2 October 2014|access-date=April 26, 2015}}</ref> The Facebook study controversy raises numerous questions about informed consent and the differences in the ethical review process between publicly and privately funded research. Some say Facebook was within its limits and others see the need for more informed consent and/or the establishment of in-house private review boards.<ref>{{cite web|author-link1=Matthew J. Salganik|last1=Salganik|first1=Matt|title=After the Facebook emotional contagion experiment: A proposal for a positive path forward|url=https://freedom-to-tinker.com/blog/mjs3/after-the-facebook-emotional-contagion-experiment-a-proposal-for-a-positive-path-forward/|website=Freedom to Tinker|date=7 July 2014 |access-date=April 26, 2015}}</ref>

===Duty to share findings===
{{see also|Return of results}}
Some researchers and ethicists advocate for researchers to share experimental results with their subjects in a way they can understand, both as an ethical obligation and as a way to encourage more participation.<ref name="return">[https://www.npr.org/sections/goatsandsoda/2024/01/22/1225670770/if-you-donate-dna-what-should-scientists-give-in-return-a-pathbreaking-new-model If you donate DNA, what should scientists give in return? A 'pathbreaking' new model]</ref> In 2023, the government of the United Kingdom proposed making this a requirement.<ref>[https://www.gov.uk/government/consultations/consultation-on-proposals-for-legislative-changes-for-clinical-trials/outcome/government-response-to-consultation-on-legislative-proposals-for-clinical-trials Government response to consultation on legislative proposals for clinical trials]</ref> The [[ELSI|Ethical, Legal, and Social Implications]] research program of the [[National Human Genome Research Institute]] in the United States has provided some funding for researchers to do this.<ref name="return" />