Protecting the Privacy of Reproductive Health Information After the Fall of <i>Roe v Wade</i>

Spector‐Bagdady, Kayte

doi:10.1001/jamahealthforum.2022.2656

Cited by 26 publications

(35 citation statements)

References 4 publications

(5 reference statements)

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“…The concept of fetal personhood, integral to many existing and pending restrictive state laws, risks undermining the personhood of the pregnant woman and placing many pregnant people at risk of state investigation, control, intrusion, and prosecution, be it from state officials or anti-abortion groups (Goodwin, 2020). Some of the new punitive abortion bans permit state officials to review medical records and question patients and clinicians (Spector-Bagdady & Mello, 2022). Those experiencing a stillbirth at home could risk having their computers or smartphones searched for information about exploring, ordering, obtaining, or using abortion pills.…”

Section: A New Clinical Quagmirementioning

confidence: 99%

Dobbs: Navigating the New Quagmire and Its Impacts on Abortion and Reproductive Health Care

Kulczycki

2022

Health Educ Behav

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On June 24, 2022, the U.S. Supreme Court issued its decision on Dobbs v. Jackson Women’s Health Organization. By voting to uphold Mississippi’s law banning most abortions after 15 weeks, the Court overturned Roe v. Wade, eliminating the federal standard protecting a woman’s right to abortion and reversing nearly 50 years of legal precedent. The ruling returned regulation of abortion to the states, which are responding by implementing bans or protecting access to abortion. As political and legal conflicts escalate and individual horror stories emerge, the dangerous mirage presented by this misguided legal fix to a long-standing vexing issue will come into sharper relief. The Dobbs ruling is creating a new uncertain and treacherous landscape for women and health care professionals to navigate.

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Section: A New Clinical Quagmirementioning

confidence: 99%

Dobbs: Navigating the New Quagmire and Its Impacts on Abortion and Reproductive Health Care

Kulczycki

2022

Health Educ Behav

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“…8, designed to evade judicial review 57 – 58 ), increased attention needs to be given to ensuring the privacy of health data and information. 59 Recognizing the possibility that laws containing “bounty hunter” enforcement mechanisms might incentivize people to disclose protected health information under cover of the law enforcement exception to the HIPAA Privacy Rule, guidance 60 was quickly issued by the Dept. of Health and Human Services Office of Civil Rights (OCR) emphasizing the narrowness of the exception and clarifying how obligations under HIPAA interact with, and prevail over, conflicting state laws with regard to data privacy and security requirements.…”

Section: Recent Activity By the Roberts Court That Will Undermine Alg...mentioning

confidence: 99%

Algorithmic Fairness in the Roberts Court Era

Wagner

2022

Biocomputing 2023

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Scientists and policymakers alike have increasingly been interested in exploring ways to advance algorithmic fairness, recognizing not only the potential utility of algorithms in biomedical and digital health contexts but also that the unique challenges that algorithms—in a datafied culture such as the United States—pose for civil rights (including, but not limited to, privacy and nondiscrimination). In addition to the technical complexities, separation of powers issues are making the task even more daunting for policymakers—issues that might seem obscure to many scientists and technologists. While administrative agencies (such as the Federal Trade Commission) and legislators have been working to advance algorithmic fairness (in large part through comprehensive data privacy reform), recent judicial activism by the Roberts Court threaten to undermine those efforts. Scientists need to understand these legal developments so they can take appropriate action when contributing to a biomedical data ecosystem and designing, deploying, and maintaining algorithms for digital health. Here I highlight some of the recent actions taken by policymakers. I then review three recent Supreme Court cases (and foreshadow a fourth case) that illustrate the radical power grab by the Roberts Court, explaining for scientists how these drastic shifts in law will frustrate governmental approaches to algorithmic fairness and necessitate increased reliance by scientists on self-governance strategies to promote responsible and ethical practices.

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“…The Supreme Court's decision in Dobbs v Jackson Women's Health, 7 for example, has elevated concerns that digital health information from menstrual period tracker apps and website purchases may reveal sensitive reproductive health data. 8 The 1996 Health Insurance Portability and Accountability Act (HIPAA) offers privacy protections only for health data and for certain health entities, which excludes most internet data and large technology firms. 9,10 Protection of consumer privacy has relied heavily on a model of consent.…”

Section: Introductionmentioning

confidence: 99%

Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information

et al. 2023

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ImportanceDigital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy.ObjectiveTo determine whether different privacy protections are associated with consumers’ willingness to share their digital health information for research, marketing, or clinical uses.Design, Setting, and ParticipantsThis 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022.Main Outcomes and MeasuresParticipants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences.ResultsOf the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P &lt; .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P &lt; .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P &lt; .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P &lt; .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%).Conclusions and RelevanceIn this survey study of a nationally representative sample of US adults, consumers’ willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information.

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Protecting the Privacy of Reproductive Health Information After the Fall of Roe v Wade

Cited by 26 publications

References 4 publications

Dobbs: Navigating the New Quagmire and Its Impacts on Abortion and Reproductive Health Care

Dobbs: Navigating the New Quagmire and Its Impacts on Abortion and Reproductive Health Care

Algorithmic Fairness in the Roberts Court Era

Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information

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