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content: corrected "non-consecutive header level increase"
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jesteria committed Dec 8, 2022
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3 changes: 2 additions & 1 deletion textbook/15/2/pillar1.ipynb
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"metadata": {},
"source": [
"# Pillar 1\n",
"### The attainment, usage, storage, analysis, and maintenance of human data should be transparent, accountable, honest, and intended for some sort of human benefit\n",
"\n",
"**The attainment, usage, storage, analysis, and maintenance of human data should be transparent, accountable, honest, and intended for some sort of human benefit**\n",
"\n",
"In order facilitate reproducibility, trusted participation, and complete comprehension of terminal goals and results, a policy of transparency and trustworthiness should be embedded into the protocol of handling human data. As most endeavors involving humans as research subjects or participants, accountability is important to maintain high ethical standards. Transparency and honesty as it pertains to acquiring, using, storing, and analyzing data includes sharing information of these methods not only with stakeholders, but relevant government and regulatory agencies and the people that the data is collected from when possible. Use of transparent and honest practices in each of these areas may increase the likelihood that the use of the data will in fact be beneficial to humans and may include, but are not limited to, the following practices:\n",
"\n",
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3 changes: 2 additions & 1 deletion textbook/15/3/pillar2.ipynb
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"metadata": {},
"source": [
"# Pillar 2\n",
"### Collected human data should be shared and maintained in a way that protects the privacy of subjects\n",
"\n",
"**Collected human data should be shared and maintained in a way that protects the privacy of subjects**\n",
"\n",
"Just as with our medical, financial, and educational records, our personal data needs to be maintained securely due to its sensitive and personally identifying nature. In the age of the Internet, technology has advanced rapidly, arguably faster than the ability for common audiences to fully understand its implications. Because use of the Web is ubiquitous, many users take for granted or are simply unaware of how their personal data is collected and used. For example, cookies are small files that can store personal preferences and data to enhance our online experience. When browsing websites, third-party cookies can communicate with their home servers to inform them about a user’s visit to a website. This is often how companies like Facebook, YouTube, and Google are able to know about someone’s online shopping habits and thus use targeted advertising on other unrelated websites. Because of legislations like the General Data Protection Regulation (GDPR)[^*], websites have become more transparent about their cookie usage and provide the opportunity for website visitors to opt out of certain cookies. Some websites, however, do not offer these opportunities and may use cookies in an unregulated fashion.\n",
"\n",
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3 changes: 2 additions & 1 deletion textbook/15/4/pillar3.ipynb
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"metadata": {},
"source": [
"# Pillar 3\n",
"### Acquisition and collection of data should involve informed consent and volition of human subjects\n",
"\n",
"**Acquisition and collection of data should involve informed consent and volition of human subjects**\n",
"\n",
"Many research studies and commercial entities collect data from human subjects. The type of data may range from personal information (e.g. name, phone number, address, etc.) to usage and activity metrics from apps, websites, and other inputs. In informed research efforts, researchers often explain to subjects the purpose of the study, the data being collected, and why it is being collected. On the other hand, commercial entities often do not take as much of a personable approach when collecting data. Usually, prior to the collection of data, subjects are presented with an extensive “Terms and Conditions” document, which may have to be accepted for the use of a product or service. Often times, people do not thoroughly read these documents, and simply “accept” these terms and conditions. While presenting human subjects with an exhaustive document containing technical and legal jargon can be viewed has providing the opportunity for informed consent, considering the context in which these “Terms of Use” is presented can be an important basis for determining if such an approach effectively aligns with ethical informed consent.\n",
"\n",
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5 changes: 3 additions & 2 deletions textbook/15/5/pillar4.ipynb
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"cell_type": "markdown",
"metadata": {},
"source": [
"# Pillar 4 \n",
"### Communication, interpretation, and application of human data should be accurate and consider social, political, and economic contexts and ramifications, especially when involving vulnerable populations\n",
"# Pillar 4\n",
"\n",
"**Communication, interpretation, and application of human data should be accurate and consider social, political, and economic contexts and ramifications, especially when involving vulnerable populations**\n",
"\n",
"Science emphasizes the use of quantitative methods and objective investigation as a means of determining accurate, unbiased conclusions about the observable world. As such, many place science into a vacuum lacking social, political, and economic influence and considers it the “closest” form of truth that we as humans can attain. As many have witnessed during the COVID-19 pandemic, science and society are very much interconnected and coevolving, for better and for worse. At certain points in history, science has been used as a tool for justification of oppression and violence against groups of people. For instance, public sentiments and “scientific” theories expressed by Sir Francis Galton, Karl Pearson, Sir Ronald Fisher, and other scientists were used to justify eugenic laws and practices across the world; some of these include the Racial Integrity Act of 1924/Buck v. Bell[^*]-[^**], the 1907 Indiana Eugenics Law[^***], and the sweep of many other legislations across North America and Europe[^****] allowing for involuntary sterilization of groups of people. This fueled several other unethical and moral crimes against humanity, including the Holocaust, forced sterilization of over 60,000 Americans (many of which were African-American and Latina women), and other forms of medical genocide. More recently, these sentiments have been cited in motivating modern racially-directed violence, as seen in the Buffalo Shooting in May 2022[^*****]. In order for science to continue facilitating advancements for the benefit of humanity, knowing this history and understanding how not to repeat it is crucial, as the effects can be detrimental and generationally traumatizing. \n",
"\n",
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