A ‘Feminist’ Server to Help People Own Their Own Data

Curated on Posted on by Stefaan Verhulst

Article by Padmini Ray Murray: “All of our digital lives reside on servers – mostly in corporate server farms owned by the likes of Google, Amazon, Apple, and Microsoft.  These farms contain machines that store massive volumes of data generated by every single user of the internet. These vast infrastructures allow people to store, connect, and exchange information on the internet. 

Consequently, there is a massive distance between users and where and how the data is stored, which means that individuals have very little control over how their data is stored and used. However, due to the huge reliance on these massive corporate technologies, individuals are left with very little choice but to accept the terms dictated by these businesses. The conceptual alternative of the feminist server was created by groups of feminist and queer activists who were concerned about how little power they have over owning and managing their data on the internet. The idea of the feminist server was described as a project that is interested in “creating a more autonomous infrastructure to ensure that data, projects and memory of feminist groups are properly accessible, preserved and managed” – a safe digital library to store and manage content generated by feminist groups. This was also a direct challenge to the traditionally male-dominated spaces of computer hardware management, spaces which could be very exclusionary and hostile to women or queer individuals who might be interested in learning how to use these technologies. 

There are two related ways by which a server can be considered as feminist. The first is based on who runs the server, and the second is based on who owns the server. Feminist critics have pointed out how the running of servers is often in the hands of male experts who are not keen to share and explain the knowledge required to maintain a server – a role known as a systems admin or, colloquially, a “sysadmin” person. Thus the concept of feminist servers emerged out of a need to challenge patriarchal dominance in hardware and infrastructure spaces, to create alternatives that were nurturing, anti-capitalist, and worked on the basis of community and solidarity…(More)”.

Can Artificial Intelligence Improve Gender Equality? Evidence from a Natural Experiment

Curated on Posted on by Stefaan Verhulst

Paper by Zhengyang Bao and Difang Huang: “Difang HuangGender stereotypes and discriminatory practices in the education system are important reasons for women’s under-representation in many fields. How to create a gender-neutral learning environment when teachers’ gender composition and mindset are slow to change? Artificial intelligence (AI)’s recent development provides a way to achieve this goal. Engineers can make AI trainers appear gender neutral and not take gender-related information as input. We use data from a natural experiment where AI trainers replace some human teachers for a male-dominated strategic board game to test the effectiveness of such AI training. The introduction of AI improves boys’ and girls’ performance faster and reduces the pre-existing gender gap. Class recordings suggest that AI trainers’ gender-neutral emotional status can partly explain the improvement in gender quality. We provide the first evidence demonstrating AI’s potential to promote equality for society…(More)”.

Digital Privacy for Reproductive Choice in the Post-Roe Era

Curated on Posted on by Stefaan Verhulst

Paper by Aziz Z. Huq and Rebecca Wexler: “The overruling of Roe v. Wade unleashed a torrent of regulatory and punitive activity restricting lawful reproductive options. The turn to the expansive criminal law and new schemes of civil liability creates new, and quite different, concerns from the pre-Roe landscape a half-century, ago. Reproductive choice, and its nemesis, rests on information. For pregnant people, deciding on a choice of medical care entails a search for advice and services. Information is at a premium for them. Meanwhile, efforts to regulate abortion begin with clinic closings, but quickly will extend to civil actions and criminal indictments of patients, providers, and those who facilitate abortions. Like the pregnant themselves, criminal and civil enforcers depend on information. And in the contemporary context, the informational landscape, and hence access to counseling and services such as medication abortion, is largely digital. In an era when most people use search engines or social media to access information, the digital architecture and data retention policies of those platforms will determine not only whether the pregnant can access medically accurate advice but also whether the mere act of doing so places them in legal peril.

This Article offers the first comprehensive accounting of abortion-related digital privacy after the end of Roe. It demonstrates first that digital privacy for pregnant persons in the United States has suddenly become a tremendously fraught and complex question. It then maps the treacherous social, legal and economic terrain upon which firms, individuals, and states will make privacy related decisions. Building on this political economy, we develop a moral and economic argument to the effect that digital firms should maximize digital privacy for pregnant persons within the scope of the law, and should actively resist restrictionist states’ efforts to instrumentalize them into their war on reproductive choice. We then lay out precise, tangible steps that firms should take to enact this active resistance, explaining in particular a range of powerful yet legal options for firms to refuse cooperation with restrictionist criminal and civil investigations. Finally, we present an original, concrete and immediately actionable proposal for federal and state legislative intervention: a statutory evidentiary privilege to shield abortion-relevant data from restrictionist warrants, subpoenas, court orders, and judicial proceedings…(More)”

State of Gender Data

Curated on Posted on by Stefaan Verhulst

Report by Data2X: “Gender data is fundamental to achieving gender equality and the Sustainable Development Goals. It helps identify inequalities, illuminate a path forward, and monitor global progress. As recognition of its importance has grown over the last decade, the availability of gender data—and its use in decision-making—has improved.

Yet overlapping crises, from the COVID-19 pandemic to climate change and conflict, have imperiled progress on gender equality and the Sustainable Development Goals. In 2022, UN Secretary General Antonio Gutierrez declared that the Sustainable Development Goals are in need of rescue. The 2022 SDG Gender Index by EM2030 found little progress on global gender equality between 2015 and 2020, and a recent assessment by UN Women demonstrates that more than one quarter of the indicators needed to measure progress on gender equality are “far or very far” from 2030 targets….The State of Gender Data is an evolving Data2X publication and digital experience designed to highlight global progress and spur action on gender data. Data2X will update the initiative annually, providing insight into a new dimension of gender data. For our initial launch, we focus on examining funding trends and highlighting promising solutions and key commitments….(More)”.

Selected Readings on the LGTBQ+ Community and Data

Curated on Posted on by Uma

By Uma Kalkar, Salwa Mansuri, Marine Ragnet and Andrew J. Zahuranec

As part of an ongoing effort to contribute to current topics in data, technology, and governance, The GovLab’s Selected Readings series provides an annotated and curated collection of recommended works on themes such as open data, data collaboration, and civic technology.

Around the world, LGBTQ+ people face exclusion and discrimination that undermines their capacity to live their lives and succeed. Together with allies, many LGBTQ+ people are fighting to exercise their rights and achieve full equality. However, this struggle has been undermined by a lack of specific, quantifiable information on the challenges they face.

When collected and managed responsibly, data about sexual and gender minorities can be used to protect and empower LGBTQ+ people through informed policy and advocacy work. To this end, this Selected Reading investigates what data is (and is not) collected about LGBTQ+ individuals in the areas within healthcare, education, economics, and public policy and the ramifications of these outcomes. It offers a perspective on some of the existing gaps regarding LGBTQ+ data collection. It also examines the various challenges that LGBTQ+ groups have had to overcome through a data lens. While activism and advocacy has increased the visibility and acceptance of sexual and gender minorities and allowed them to better exercise their rights in society, significant inequities remain. Our literature review puts forward some of these recent efforts.

Most of the papers included in this review, however, conclude with similar findings: data for about LGBTQ+ communities is still lacking and as a result, research on the topic is often times also lagging behind. This is particularly problematic, as detailed in some of our readings, because LGBTQ+ populations are often at the center of discrimination and still face disparate health vulnerabilities. The LGBTQI+ Data Inclusion Act, which recently passed the US House of Representatives and would require over 100 federal agencies to improve data collection and surveying of LGBTQ communities, seeks to address this gap.

We hope this selection of readings can provide some clarity on current data-driven research for and about LGBTQ+ individuals. The readings are presented in alphabetical order.

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Selected Reading List (in alphabetical order)

***

Annotated Selected Reading List (in alphabetical order):

D’Ignazio, Catherine, and Lauren F. Klein. Data Feminism. MIT Press, 2020. https://mitpress.mit.edu/books/data-feminism.

  • D’Ignazio and Klein investigate how data has been historically used to maintain specific social status quos. To overcome this challenge, they approach data collection and uses through an intersectional, feminist lens that identifies issues in current data handling systems and looks toward solutions for more inclusive data applications.
  • The editors define data feminism as “power, about who has it and who doesn’t, and about how those differentials of power can be challenged and changed using data.” The book centers around seven principles that identify and challenge existing power structures around data and seek pluralist, context-based data processes that illuminate hidden and missed data.

Giblon, Rachel, and Greta R. Bauer. “Health care availability, quality, and unmet need: a comparison of transgender and cisgender residents of Ontario, Canada.” BMC Health Services Research 17, no. 1 (2017): 1–10. https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2226-z.

  • Canada boasts a universal healthcare and insurance system, yet disparities exist between the treatment quality, services, and knowledge about transgender patients.
  • Data collection on transgender, non-binary, and intersex individuals is not conducted in Canadian health surveys, making it difficult to compare and contrast the healthcare provided to transgender people with that provided to cisgender people. Moreover, a lack of physician knowledge about trans needs and/or refusal to provide hormone therapy/ gender-affirming procedures result in trans individuals explicitly avoiding medical services. The lack of services, comfort, and data about transgender people in Canada demonstrate their severely “unmet health care need.”
  • Using data about Ontario residents from the Canadian Community Health Survey and the Trans PULSE survey, the researchers find that 33% transgender Ontarians had an unmet health need that would not be unmet if they were cisgender. As well, transgender men and women found the quality of healthcare in their community to be poor than compared to cisgender individuals. Twenty-one percent of transgender people avoided going to emergency rooms because of their gender identity.

Bowleg, Lisa, and Stewart Landers. “The need for COVID-19 LGBTQ-specific data.” American Journal of Public Health 111, no. 9 (2021): 1604–1605. https://pubmed.ncbi.nlm.nih.gov/34436923/.

  • The adage “no data, no problem” has been magnified during the pandemic, highlighting gaps around data collection for LGBTQ communities, which often intersect with other communities who are disproportionately at-risk for COVID-19, such as minority populations in the service industry and those who smoke.
  • Despite concerns about the stigma facing LBGTQ communities, data collection from these demographics has been relatively feasible, with federal governments drastically increasing their data collection from LGBTQ communities.
  • However, the lack of direction and guidance at a federal level to collect sexual and gender minority data has stunted information about how this demographic has experienced COVID-19 when compared to cis-gender, heterosexual groups. The authors stress the need for data collection from LGBTQ communities and advocacy to encourage these practices to help address the pandemic.

Marshall, Zack, Vivian Welch, Alexa Minichiello, Michelle Swab, Fern Brunger, and Chris Kaposy. “Documenting research with transgender, nonbinary, and other gender diverse (trans) individuals and communities: introducing the global trans research evidence map.” Transgender Health 4, no. 1 (2019): 68–80. https://www.liebertpub.com/doi/10.1089/trgh.2018.0020.

  • Marshall and colleagues study a series of 15 academic databases to assemble a dataset describing 690 trans-focused articles. They then map where and how transgender “have been studied and represented within and across multiple fields of research” to understand the landscape of existing research on transgender people. They find that research around the trans community focused on physical and mental healthcare services and marginalization and were primarily observational research.
  • The authors found that social determinants of health for transgender people were the least studied, along with ethnicity, culture, and race, violence, early life experiences, activism, and education.
  • With this evidence map, researchers have a strong starting point to further explore issues through a LGBTQ lens and better engage with trans people and perspectives when looking at social problems.

Medina, Caroline and Lindsay Mahowald. “Collecting Data about LGBTQI+ and Other Sexual and Gender-Diverse Communities.” Center for American Progress, May 26, 2022. https://www.americanprogress.org/article/collecting-data-about-lgbtqi-and-other-sexual-and-gender-diverse-communities.

  • The paper argues, that despite advances “a persistent lack of routine data collection on sexual orientation, gender identity, and variations in sex characteristics (SOGISC) is still a substantial roadblock for policymakers, researchers, service providers, and advocates seeking to improve the health and well-being of LGBTQI+ people.”
  • Even though various types of data are integral to the experiences of LGBTQI+ people, the report narrows its focus to data collection in two forms of environments: general population surveys & surveys regarding LGBTQI+ people. Specific population surveys such as the latter provide significant advantage to capture specific and sensitive data.
  • It argues that a range of precautions can be adopted from a research design perspective to ensure that personal data and information is handled with care and matches ethical standards as outlined in the Data Ethics Framework of the Federal Data Strategy ranging from privacy and confidentiality to honesty and transparency.

Miner, Michael H., Walter O. Bockting, Rebecca Swinburne Romine, and Sivakumaran Raman. “Conducting internet research with the transgender population: Reaching broad samples and collecting valid data.” Social science computer review 30, no. 2 (2012): 202–211. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3769415/.

  • The internet has the potential to collect information from transgender people, who are “a hard-to-reach, relatively small, and geographically dispersed population” in a diverse and representative manner.
  • To study HIV risk behaviors of transgender individuals in the U.S., Miner et al. developed an online tool that recruited individuals who frequent websites that are important for the transgender community and used quantiative and qualitative methods to learn more about these individuals. They conclude that while online data collection can be difficult to ensure internal validity, careful testing and methods can overcome these issues to improve data quality on transgender people.

Pega, Frank, Sari L. Reisner, Randall L. Sell, and Jaimie F. Veale. “Transgender health: New Zealand’s innovative statistical standard for gender identity.” American journal of public health 107, no. 2 (2017): 217–221. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5227923/.

  • Pega et al. discuss New Zealand’s national statistical standard for gender identity data collection, the first of its kind. More governments in Australia and the United States are now following suit to address the health access and information disparity that transgender people face.
  • Data about transgender people has advanced progressive policy action in New Zealand, and the authors celebrate this statistical standard as a way to collect high quality data for data-driven policies to support these groups.
  • While this move will help uncover LGBTQ individuals currently hidden in data, the authors critique the standard because it does not “promote the two-question method, risking misclassification and undercounts; does promote the use of the ambiguous response category “gender diverse” in standard questions; and is not intersex inclusive.”

Ruberg, Bonnie, and Spencer Ruelos. “Data for Queer Lives: How LGBTQ Gender and Sexuality Identities Challenge Norms of Demographics.” Big Data & Society 7, no. 1 (June 18, 2020): 205395172093328. https://journals.sagepub.com/doi/full/10.1177/2053951720933286.

  • Drawing from the responses of 178 people who identified as non-heterosexual or non-cisgender in a survey, this paper argues that “dominant notions of demographic data, […] that seeks to accurately categorize and “capture” identity do not sufficiently account for the complexities of LGBTQ lives.”
  • Demographic data commonly imagines identity as fixed, singular, and discrete. However, the researchers’ findings suggest that, for LGBTQ people, gender and sexual identities are often multiple and in flux. Most respondents reported their understanding of their identity shifting over time. For many, “gender identity was made up of overlapping factors, including the relationship between gender and transgender identities. These findings challenge researchers to reconsider how identity is understood as and through data.” They argue that considering identities as fixed and discrete are not only exclusionary but also do not wholly represent the dynamic and fluid nature of gender identities.
  • The piece offers several recommendations to address this challenge. Firstly, the researchers argue to remove data discreteness, which will enable users to select multiple identities rather than choose one from a drop-down list. Secondly, create communication and feedback channels for LGBTQ+ to express whether surveys and other data collection methods are sufficiently inclusive and gender-sensitive.

Sell, Randall L. “LGBTQ health surveillance: data = power.” American Journal of Public Health 107, no. 6 (2017): 843–844. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5425894/.

  • Sell recounts his motto: ‘data = power;’ ‘silence = death’ and how LGBTQ people have been victims of this situation. He argues that health research and surveillance has systemically ignored sexual and gender minorities, leading to gaps in administrative understanding and policies for LGBTQ population.
  • He laments that very few surveys on American health collect sexual and gender orientation data, and the lack of standardization around this data collection muddies researchers’ ability to collate and utilize the information meaningfully.
  • He calls for legislation that mandates the National Institutes of Health to include sexual and gender minorities in all publicly funded research similar to the specific inclusion requirement of women and racial and ethnic minorities in studies. Despite concerns about surveillance and targeting of LGBTQ minorities, Sell argues that data collection is imperative now for a long-scale understanding of the needs of the community, transcending political terms.

Snapp, Shannon D., Stephen T. Russell, Mariella Arredondo, and Russell Skiba. “A right to disclose: LGBTQ youth representation in data, science, and policy.” Advances in child development and behavior 50 (2016): 135–159. https://pubmed.ncbi.nlm.nih.gov/26956072/.

  • Despite significant and positive reforms such as the legalization of same-sex marriages and protection from intersectional sexual harrasment (Webb, 2011) in the United States, there is a striking gap in literature on evidence-based practices that support LGBTQ+ Youth (Kosciw & Pizmony-Levy, 2013). The lack of data-driven solutions stifle the creation of inclusive environments where members of the LGBTQI+ community feel heard and seen. There is a striking gap in literature on evidence-based practices that support LGBTQ+ Youth (also see Kosciw & Pizmony-Levy, 2013; Mustanski, 2011).
  • At present federal and local state data-states do not include SOGI (Sexual Oreintation & Gender Identity) in demographic questions. Data sets that do have spaces to disclose SOGI are largely in a health-related setting such as the Centre for Disease Control or Youth Risk Behavior. As such learning and education disparities and outcomes are not accurately measured.
  • Missing systematic SOGI data renders members of the LGBTQ+ community invisible and sidelined. As such several members of civil society have therefore demanded for the need to gather SOGI data in the Department of Health, Education & Justice. Such data is therefore central to holistically encapsulate the discriminatory experiencees LGBTQ+ Youth face in an education setting, integral to well-being and development. Scholars and research teams have thusfar overcome the barriers of data reliability and validity (see Ridolfo, Miller, & Maitland, 2012) by collating the most effective methods for data collection (Sexual Minority Assessment Research Team, 2009).

Wimberly, George L. “Chapter 10: Use of large-scale data sets and LGBTQ education.” LGBTQ issues in education: Advancing a research agenda (2015): 175–218. https://ebooks.aera.net/LGBTQCH10.

  • This book chapter highlighs the importance of large-scale data sets to gain understanding about LGBTQ students, school experiences, and academic achievement.
  • Young people who identify as LGBTQ tend to be generalized and ways that LGBTQ identification questions are asked by surveys change across years, making it important to disaggregate large-scale data for more granular knowledge about LGBTQ people in education.
  • Wimberly provides information about multiple datasets that collect this information, how they ask questions on LGBTQ identity, and ways in which the datasets have been used or have the potential to be leveraged for a more comprehensive understanding of students. He also points out the limitations of existing data sets, namely that they tend to be retrospective of the LGBTQ adolescent experience and collected from convenience samples, such as college students. This limitation also impacts the external validity of the data, especially with regard to rural, racialized, and lower-income LGBTQ students.

Roe’s overturn is tech’s privacy apocalypse

Curated on Posted on by Stefaan Verhulst

Scott Rosenberg at Axios: “America’s new abortion reality is turning tech firms’ data practices into an active field of conflict — a fight that privacy advocates have long predicted and company leaders have long feared.

Why it matters: A long legal siege in which abortion-banning states battle tech companies, abortion-friendly states and their own citizens to gather criminal evidence is now a near certainty.

  • The once-abstract privacy argument among policy experts has transformed overnight into a concrete real-world problem, superheated by partisan anger, affecting vast swaths of the U.S. population, with tangible and easily understood consequences.

Driving the news: Google announced Friday a new program to automatically delete the location data of users who visit “particularly personal” locations like “counseling centers, domestic violence shelters, abortion clinics, fertility centers, addiction treatment facilities, weight loss clinics, cosmetic surgery clinics, and others.”

  • Google tracks the location of any user who turns on its “location services” — a choice that’s required to make many of its programs, like Google Search and Maps, more useful.
  • That tracking happens even when you’re logged into non-location-related Google services like YouTube, since Google long ago unified all its accounts.

Between the lines: Google’s move won cautious applause but left plenty of open concerns.

  • It’s not clear how, and how reliably, Google will identify the locations that trigger automatic data deletion.
  • The company will not delete search requests automatically — users who want to protect themselves will have to do so themselves.
  • A sudden gap in location data could itself be used as evidence in court…(More)”.

Selected Readings on the Intersection of Data, Abortion Care, and Women’s Health

Curated on Posted on by Uma

By: Uma Kalkar, Salwa Mansuri, Andrew J. Zahuranec

As part of an ongoing effort to contribute to current topics in data, technology, and governance, The GovLab’s Selected Readings series provides an annotated and curated collection of recommended readings on themes such as open data, data collaboration, and civic technology.

In this edition, we reflect on the intersection between data, abortion, and women’s health following the United States Supreme Court ruling regarding Dobbs v. Jackson Women’s Health Organization which held that there was no constitutional right to abortion and decided that individual states have the authority to regulate access to abortion services. In the days before and since the decision, a large amount of literature has been produced both on the implications of this ruling for individuals’ data privacy and the effects on women’s social and economic lives. It is clear that, while opinions on access to abortion services are often influenced by deeply held attitudes about women’s bodily autonomy and when life begins, data has critical importance both as a potential source of risk and as a tool to understand the decision’s impact.

Below we curate some stories from news sources and academic papers on the role of data in abortion services as well as data-driven research by institutions into the effects of abortion. We hope this selection of readings provides a broader perspective on how data and women’s rights and health intersect.

As well, we urge that anyone seeking further information about abortion access visit www.ineedana.com via a secure site, and preferably via a VPN. For those looking for menstrual apps, Spot On by the Planned Parenthood Federation of America saves data locally on phones, does not provide information to third parties, and allows for anonymous accounts.

The readings are presented in alphabetical order.

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Data & Privacy Concerns

Conti-Cook, Cynthia. “Surveilling the Digital Abortion Diary: A Preview of How Anti-Abortion Prosecutors Will Weaponize Commonly-Used Digital Devices As Criminal Evidence Against Pregnant People and Abortion Providers in a Post-Roe America.” University of Baltimore Law Review, forthcoming. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3666305

  • In this four-part article, Conti-Cook discusses the history of health data rights and the long-standing ways in which digital evidence produced by pregnant people has been used to prosecute their actions. She discusses how digital technologies help prosecutors lay charges against those seeking abortions and how they help “ the state see[k] control over [them] by virtue of their pregnancy status” by digitally surveilling them.
  • The author examines how “digital, biometric, and genetic surveillance” serves as a vehicle to “microtarget” historically oppressed communities” under a patriarchal and racist social structure.
  • She also discusses how online searches relating to pregnancy termination and abortion, location and tracking data, site history, wearable devices, and app data can be factored into risk assessment tools to assess social service outcomes and federal prosecutions.
  • Conti-Cook ends by reviewing digital hygiene strategies to stop the use of personal data against oneself and foster a more critical use of digital tools for reproductive and pregnancy-related health needs.

Diamant, Jeff, and Besheer Mohamed. “What the Data Says about Abortion in the U.S.” Pew Research Center, June 24, 2022. https://www.pewresearch.org/fact-tank/2022/06/24/what-the-data-says-about-abortion-in-the-u-s-2

  • In the aftermath of the overturn of Roe v. Wade (1973), the Pew Research Center published a compilation of facts and statistics about abortion care in the United States obtained through the Centers for Disease Control and Prevention and Guttmacher Institute.
  • The piece describes shifting trends pertaining to the number of legal abortions conducted each year in the United States since the 1970s, the abortion rate among women, the most common types of abortions, and the number of abortion providers over time. It describes, for example, how the procedure has generally declined at “a slow yet steady pace” since the early 1990s. It also notes that the number of providers has declined over time.

Paul, Kari. “Tech Firms under Pressure to Safeguard User Data as Abortion Prosecutions Loom.” The Guardian, June 25, 2022, sec. US news. https://www.theguardian.com/us-news/2022/jun/25/tech-companies-health-data-security-abortion-prosecution

  • Paul writes about the concerns of abortion and civil rights activists on how data collected about individuals through apps and online searches might incriminate those seeking or providing abortion services. It notes how geo-location data used by tech companies can make “it easy for law enforcement officials to access incriminating data on location, internet searches, and communication history.”
  • While period tracking apps have received significant attention, the article notes that companies such as Meta, Uber, Lyft, Google, and Apple have yet to publicly announce how they would respond to law enforcement requests on abortion evidence.
  • The piece finally includes a recommendation from the digital rights advocacy group Electronic Frontier Foundation that companies preemptively prepare “for a future in which they are served with subpoenas and warrants seeking user data to prosecute abortion seekers and providers.” It suggests end-to-end encryption as a default, refraining from collecting location information, and allowing anonymous or pseudonymous access to apps.

Nguyen, Nicole, and Cordilia James. “How Period-Tracker Apps Treat Your Data, and What That Means If Roe v. Wade Is Overturned.” Wall Street Journal, June 21, 2022. https://www.wsj.com/articles/how-period-tracker-apps-treat-your-data-and-what-that-means-if-roe-v-wade-is-overturned-11655561595

  • Nguyen and James provide an extensive analysis of the ways that period tracking apps track, collect, store, and share data about women’s fertility and menstrual cycle. Following Dobbs v. Jackson Women’s Health Organization (2022), which overturned Roe v. Wade (1973), there has been significant public concern about the (re)use of the data these apps collect.
  • They detail different kinds of data that could be subpoenaed from period trackers and the terminology that users can search for in an app’s privacy policy to understand how their data will be used. It describes, for example, what it means to when Terms & Conditions outline how they will “encrypt” (that is, to scramble into an incoherent string of code), “share” or “sell” (data can be given to third parties such as advertisers), and respond to “requests” (companies may notify the user when a court or government data asks for data).
  • The article closes with an overview of the most-downloaded fertility apps — including Flo, Apple Health, Clue, FitBit, Glow, and Natural Cycles — and where they stand on data privacy.

Sherman, Jenna. “How Abortion Misinformation and Disinformation Spread Online.” Scientific American, June 24, 2022. https://www.scientificamerican.com/article/how-abortion-misinformation-and-disinformation-spread-online/

  • In Scientific American, Sherman writes an opinion piece on the growth of online dis- and misinformation in the aftermath of Dobbs. She summarizes how, according to current data-driven research, much of the information people find online about abortion is not reliable and that the highest volume of online searches about abortion tends to be in those states with the most restricted access.
  • Despite much research on abortion, Sherman notes “a lack of access to quality information or care” online, especially for marginalized communities. She also summarizes the results of studies on social media and search engines. In one 2021 study, searches for “abortion pill” tended not to yield scientifically accurate and moderately accessible information.
  • Another study cited in the article found that half of the web pages surfaced by Google on abortion contained misinformation. This appears to be by design — with false information about “abortion pill reversal” and abortion practices generating large revenues for platforms like Facebook.

Data on the Impact of Abortion Access

Amador, Diego. “The Consequences of Abortion and Contraception Policies on Young Women’s Reproductive Choices, Schooling and Labor Supply.” Documento CEDE №2017–43 (2017). https://ssrn.com/abstract=2987367

  • Amador analyzes aggregate provider data from the Guttmacher Institute to assess the relationship between contraceptive use, abortion, schooling, and labor decisions of US women. The dataset follows a sample of women born between 1980 and 1984, with data from interviews starting in 1997 and ending in 2011.
  • A counterfactual model based on the data suggests that a perfectly enforced ban on abortions would raise the rate of standard contraceptive use for women 9.1%. The fraction of children born to single mothers would increase from 30% to 34% while the average amount of schooling after high school would decrease by 3.1%. The number of women with college degrees would drop by 1.8% age points. The estimated average loss in lifetime earnings for women who would have at least had one abortion was estimated at USD 39,172.
  • The author also assesses the impact that free contraception would have, suggesting a 15.7 decrease in pregnancies per 1000 women and an 11.6 reduction in abortions per 1000 women. Accumulated schooling after high school increased by an estimated 3%. An assessment of mandatory counseling laws found that the long-run effect of these laws on women ages 18 to 30 was a 10% decrease in abortion rates.
  • The author concludes that policies such as an abortion ban and free contraception have important effects on schooling and lifetime earnings but only a moderate impact on labor supply.

ANSIRH. “Introduction to the Turnaway Study.” ANSIRH, March 2020. https://www.ansirh.org/sites/default/files/publications/files/turnawaystudyannotatedbibliography.pdf

  • This fact sheet summarizes various analyses stemming from the Turnaway Study, the first study to rigorously examine the effects of receiving abortion services versus being denied access to them. The study is an initiative by Advancing New Standards in Reproductive Health (ANSIRH), a program within the UCSF Bixby Center for Global Reproductive Health. It examines 1,000 women seeking abortion from 30 facilities around the country, with interviews conducted over five years.
  • Studies conducted with the dataset find that the most common reason for women to seek an abortion was not being able to afford a child and/or not having a suitable partner/parent involved to assist with childrearing. Most women don’t feel pressured by counseling that occurs in clinics but find it less helpful when it is state-mandated. Half of all women report seeing anti-abortion protestors at clinics and greater contact with them tends to be more upsetting.
  • Studies also suggest no evidence that abortion causes negative mental health outcomes, although being denied an abortion is associated with elevated anxiety and stress and lower self-esteem. Those who receive an abortion experience “a mix of positive and negative emotions in the days after […] with relief predominating.” The intensity of the emotion diminishes over time but over 95% of women report “abortion was the right decision for them at all times over five years after.”
  • Carrying an unwanted pregnancy tended to be associated with worse outcomes for women’s physical health and socioeconomic status. Women denied abortion who later gave birth reported more chronic pain and rated their overall health as worse. Economic insecurity for women and their families increased almost four-fold. In terms of education, women who received abortions tended to have higher odds of having positive one-year plans while women denied abortions were no more or less likely to drop out of school.

Donohue, John J., and Steven D. Levitt. “The Impact of Legalized Abortion on Crime Over the Last Two Decades.” The University of Chicago, Becker Friedman Institute for Economics Working Paper №2019–75 (May 2017). https://ssrn.com/abstract=3391510

  • This paper primarily argues that legalizing abortion in the 1970s had positive consequences in the significant reduction of crime even two decades later, in the 1990s. In particular, the paper suggested an approximate 20% decrease in crime rates between 1997 and 2014. Not only is abortion legalization a crucial factor but perhaps one of the most crucial ones in the significant reduction in crime rates (see Donohue and Levitt, 2001).
  • A particularly crucial aspect of the data collected was that it took close to a decade for the “number of abortions performed to reach a steady-state” attributed to the variability and heterogeneity of state-level data due to the variability and dynamic nature of evolving abortion legislation and abortion reform.
  • Moreover, the effect of abortion on crime rates was only incrementally visible as “crime-aged cohorts” were gradually exposed to legalized abortion. Donohue and Levitt’s work supports the abortion-crime hypothesis — that increased access to abortion would decrease crime.

Frost, Jennifer J., Jennifer Mueller, and Zoe H. Pleasure. “Trends and Differentials in Receipt of Sexual and Reproductive Health Services in the United States: Services Received and Sources of Care, 2006–2019.” The Guttmacher Institute, June 24, 2021. https://doi.org/10.1363/2021.33017

  • This report describes trends in reproductive and sexual health care across the United States over a 13-year period as told by the National Survey of Family Growth, the only national data source that contains detailed information on sexual and reproductive health. It finds that some 7 in 10 women of reproductive age (44 million people) make at least one medical visit for sexual and reproductive health care each year. However, disparities exist — Hispanic women are less likely to receive care than White women, and the uninsured are substantially less likely to receive care than privately insured women.
  • It further finds that publicly funded clinics were a critical source of care for young women, lower-income women, women of color, foreign-born women, women on Medicaid, and women without insurance.
  • The report also finds that the Affordable Care Act increased the number of women receiving contraceptive services by 8% among women with private providers. There was a complimentary drop among women receiving contraceptive care from publicly funded clinics.

Hill, J. Jackson IV. “The Need for a National Abortion Reporting Requirement: Why Both Sides Should Be in Support of Better Data.” Available at SSRN (May 2, 2014). https://ssrn.com/abstract=2306667.

  • Hill writes a paper urging organizations to improve the status of abortion reporting in the United States. Examining statistics collected by the Centers for Disease Control and the Guttmacher Institute, the author finds serious deficiencies, including a lack of voluntary reporting from states, conflicting requirements (or unenforced requirements) about what data is collected, and an absence of timely data.
  • After the passage of Roe, state legislatures attempted to mandate abortion reporting and monitoring; however, concerns over the safety of women’s choice, undue administrative hurdles, and issues over pervasive data collection made it difficult to impose a standardized, non-intrusive, and anonymized data collection practice.
  • Hill argues that these data gaps and paternalistic methods of collecting data have had consequences on the ability of policymakers to make decisions around abortion policy and undermine the public’s knowledge on the issue. He assesses the feasibility of federally regulated abortion data and potential other strategies for achieving reliable, uniform data. He proposes two avenues for a “comprehensive, uniform abortion data” set: a ‘command’ option that requires states to provide and collect abortion information for a federal database or a ‘bribe’ option that monetarily incentivizes states to provide this information.

Knowles Myers, Caitlin, and Morgan Welch. “What Can Economic Research Tell Us about the Effect of Abortion Access on Women’s Lives?” Brookings, November 30, 2021. https://www.brookings.edu/research/what-can-economic-research-tell-us-about-the-effect-of-abortion-access-on-womens-lives/

  • Knowles Myers and Welch write on what current economic research suggests about abortion access on women’s reproductive, social, and economic outcomes.
  • Comparing Alaska, California, Hawaii, New York, Washington, and the District of Columbia (states which repealed abortion bans prior to Roe) to other states, research suggests states that repealed abortion bans had between a 4–11% decline in births relative to the rest of the country — with effects particularly large for teens and women of color. Studies also suggest that abortion legalization reduced the number of teen mothers by 34% and reduced maternal mortality by 30–40%, with little impact on white women.
  • Additional studies indicate that abortion access has a large impact on the circumstances under which children are born. Various studies find that abortion legalization reduced the number of unwanted children, cases of neglect and abuse, and the number of children living in poverty. It also improved long-term outcomes by increasing the likelihood of child attendance in college.
  • Other studies find that abortion and pregnancy have substantial impact on women’s economic and social lives, with pregnancy frequently lowering women’s wages. This fact has substantial implications for “low-income mothers experiencing disruptive life events.” Based on various studies, the authors argue that “access to abortion could be pivotal to these women’s financial lives.”
  • While abortion is driven by views on women’s bodily autonomy and when life begins, the authors find a clear causal link between access to abortion and “whether, when, and under what circumstances women become mothers.” All studies suggest that access to abortion can have substantial implications on education, earnings, careers, and life outcomes. Restricting or eliminating access would diminish women’s personal and economic lives along with that of their families.

Maxmen, Amy. “Why Hundreds of Scientists Are Weighing in on a High-Stakes US Abortion Case.” Nature 599, no. 7884 (October 26, 2021): 187–89. https://doi.org/10.1038/d41586-021-02834-7

  • A piece by Amy Maxmen for Nature summarizes a recent amicus brief filed by more than 800 scientists and several scientific organizations providing data-driven research into how abortion access is an important aspect of reproductive health.
  • It notes, for example, more than 40 studies suggesting that receiving an abortion does not harm a woman’s mental or physical health but that being denied an abortion can result in negative financial and health outcomes. It also cites a 2019 study of nearly 900 women who “who sought but were unable to get abortions reported higher rates of chronic headaches and joint pain five years later, compared with those who got an abortion,” while a similar 2017 study finds no similar physical or psychological effects.
  • A separate amicus brief submitted to the Court by about 550 public health and reproductive health researchers described how unwanted pregnancies can result in worse health outcomes. It also can disproportionately harm the physical, mental, and economic well-being of Black people according to a separate study.
  • An additional amicus brief filed by economists notes several studies that found that “abortion legalization in the 1970s helped to increase women’s educational attainment, participation in the labor force and earnings — especially for single Black women.”

Myers, Caitlin, and Ladd, Daniel. “Did parental involvement laws grow teeth? The effects of state restrictions on minors’ access to abortion.” Journal of Health Economics, 71, (2020): p.102302. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3029823

  • A paper by Caitlin Knowles Myers of Germany’s IZA Institute of Labor Economics and Daniel Ladd of the University of California, Irvine compiles data on the location of abortion providers and enforcement of parental involvement laws. The researchers seek to assess the impact of laws requiring parental approval for an abortion have on minors seeking abortions.
  • The paper concludes that parental involvement laws may have contributed to a modest decline in teen births (a 1.4% reduction) during the 1980s and 1990s but a 2.8% increase from 1993 to 2014 in women aged 15 to 18.
  • It further finds that laws with an avoidance distance (the distance minors have to travel to avoid parental involvement and can seek an abortion confidentially) have significant effects. In the 1980s, a parental involvement law with an avoidance distance of 100 miles decreased teen births by 1.48%. A parental involvement law with a 400-mile avoidance distance, about a day’s drive, increases the teen birth rate by 4.3%.

Popinchalk, Anna, Cynthia Beavin, and Jonathan Bearak. “The State of Global Abortion Data: An Overview and Call to Action.” BMJ Sexual & Reproductive Health 48, no. 1 (January 1, 2022): 3–6. https://doi.org/10.1136/bmjsrh-2021-201109.

  • Popinchalf and colleagues at the Guttmacher Institute write in the journal BMJ Sexual & Reproductive Health on the urgent need for data on abortion incidents and access to examine disparities in people’s ability to safely terminate a pregnancy.
  • The authors note that the three sources of data on abortion are official statistics, surveys of women, and scientific studies. However, stigmatization and varying legal access undermine the quality of this data and can lead to substantial under-reporting. Even in high-income countries, there can be significant variation in the frequency with which data is published. This variation in quality and availability exacerbates inequities by limiting the number of experiences that can be studied.
  • The authors argue that data availability and quality of abortion care can be improved by investing in country-level surveys and scientific studies. It also argues for reducing stigma through community and provider messaging as it can hinder the accuracy and completeness of datasets.

Tierney, Katherine I. “Abortion Underreporting in Add Health: Findings and Implications.” Population Research and Policy Review 38, no. 3 (June 1, 2019): 417–28. https://doi.org/10.1007/s11113-019-09511-8

  • Tierney notes that there is substantial evidence that abortion is significantly underreported in the United States, especially among Black women and those in lower socioeconomic classes.
  • She supplements this review with her own evaluation of the abortion data in the National Longitudinal Study of Adolescent to Adult Health (Add Health), finding that the dataset captures only 35% of expected abortions. Examining data from 1994–1995, 1996, 2001–2002, and 2008–2009, she found severe abortion underreporting; however, there were no significant differences between race/ethnicity, age, or time of abortion and underreporting.
  • Tierney argues that this fact means that Add Health is no better than other surveys in collecting abortion data. She also argues that this underreporting, likely caused by stigma, has substantial implications for research and that researchers should be cautious with self-reports of abortion. Figures need to be evaluated, contextualized, and used with caution.

How Period-Tracker Apps Treat Your Data, and What That Means if Roe v. Wade Is Overturned

Curated on Posted on by Stefaan Verhulst

Article by Nicole Nguyen and Cordilia James: “You might not talk to your friends about your monthly cycle, but there’s a good chance you talk to an app about it. And why not? Period-tracking apps are more convenient than using a diary, and the insights are more interesting, too. 

But how much do you know about the ways apps and trackers collect, store—and sometimes share—your fertility and menstrual-cycle data?

The question has taken on new importance following the leak of a draft Supreme Court opinion that would overturn Roe v. Wade. Roe established a constitutional right to abortion, and should the court reverse its 1973 decision, about half the states in the U.S. are likely to restrict or outright ban the procedure.

Phone and app data have long been shared and sold without prominent disclosure, often for advertising purposes. HIPAA, aka the Health Insurance Portability and Accountability Act, might protect information shared between you and your healthcare provider, but it doesn’t typically apply to data you put into an app, even a health-related one. Flo Health Inc., maker of a popular period and ovulation tracker, settled with the Federal Trade Commission in 2021 for sharing sensitive health data with Facebook without making the practice clear to users.

The company completed an independent privacy audit earlier this year. “We remain committed to ensuring the utmost privacy for our users and want to make it clear that Flo does not share health data with any company,” a spokeswoman said.

In a scenario where Roe is overturned, your digital breadcrumbs—including the kind that come from period trackers—could be used against you in states where laws criminalize aiding in or undergoing abortion, say legal experts.

“The importance of menstrual data is not merely speculative. It has been relevant to the government before, in investigations and restrictions,” said Leah Fowler, research director at University of Houston’s Health Law and Policy Institute. She cited a 2019 hearing where Missouri’s state health department admitted to keeping a spreadsheet of Planned Parenthood abortion patients, which included the dates of their last menstrual period.

Prosecutors have also obtained other types of digital information, including text messages and search histories, as evidence for abortion-related cases…(More)”.

Canada is the first country to provide census data on transgender and non-binary people

Curated on Posted on by Stefaan Verhulst

StatsCan: “Prior to the 2021 Census, some individuals indicated that they were not able to see themselves in the two responses of male or female on the existing sex question in the census.

Following extensive consultation and countrywide engagement with the Canadian population, the census evolved—as it has for more than a century—to reflect societal changes, adding new content on gender in 2021.

Beginning in 2021, the precision of “at birth” was added to the sex question on the census questionnaire, and a new question on gender was included. As a result, the historical continuity of information on sex was maintained while allowing all cisgender, transgender and non-binary individuals to report their gender. This addressed an important information gap on gender diversity (see Filling the gaps: Information on gender in the 2021 Census and 2021 Census: Sex at birth and gender—the whole picture).

For many people, their gender corresponds to their sex at birth (cisgender men and cisgender women). For some, these do not align (transgender men and transgender women) or their gender is not exclusively “man” or “woman” (non-binary people).

The strength of the census is to provide reliable data for local communities throughout the country and for smaller populations such as the transgender and non-binary populations. Statistics Canada always protects privacy and confidentiality of respondents when disseminating detailed data.

These modifications reflect today’s reality in terms of the evolving acceptance and understanding of gender and sexual diversity and an emerging social and legislative recognition of transgender, non-binary and LGBTQ2+ people in general, that is, people who are lesbian, gay, bisexual, transgender, queer, Two-Spirit, or who use other terms related to gender or sexual diversity. In 2017, the Canadian government amended the Canadian Human Rights Act and the Canadian Criminal Code to protect individuals from discrimination and hate crimes based on gender identity and expression.

These data can be used by public decision makers, employers, and providers of health care, education, justice, and other services to better meet the needs of all men and women—including transgender men and women—and non-binary people in their communities….(More)”.

Roe draft raises concerns data could be used to identify abortion seekers, providers

Curated on Posted on by Stefaan Verhulst

Article by Chris Mills Rodrigo: “Concerns that data gathered from peoples’ interactions with their digital devices could potentially be used to identify individuals seeking or performing abortions have come into the spotlight with the news that pregnancy termination services could soon be severely restricted or banned in much of the United States.

Following the leak of a draft majority opinion indicating that the Supreme Court is poised to overturn Roe v. Wade, the landmark 1973 decision that established the federal right to abortion, privacy advocates are raising alarms about the ways law enforcement officials or anti-abortion activists could make such identifications using data available on the open market, obtained from companies or extracted from devices.

“The dangers of unfettered access to Americans’ personal information have never been more obvious. Researching birth control online, updating a period-tracking app or bringing a phone to the doctor’s office could be used to track and prosecute women across the U.S.,” Sen. Ron Wyden (D-Ore.) said in a statement to The Hill. 

Data from web searches, smartphone location pings and online purchases can all be easily obtained with little to no safeguards.

“Almost everything that you do … data can be captured about it and can be fed into a larger model that can help somebody or some entity infer whether or not you may be pregnant and whether or not you may be someone who’s planning to have an abortion or has had one,” Nathalie Maréchal, senior policy manager at Ranking Digital Rights, explained. 

There are three primary ways that data could travel from individuals’ devices to law enforcement or other groups, according to experts who spoke with The Hill.

The first is via third party data brokers, which make up a shadowy multibillion dollar industry dedicated to collecting, aggregating and selling location data harvested from individuals’ mobile phones that has provided unprecedented access to the daily movements of Americans for advertisers, or virtually anyone willing to pay…(More)”.