My Data, My Body, My Rights

Catalyzing action on data rights and bodily autonomy in the use of digital technology for sexual and reproductive health

Credit: Salim Hanzaz/Getty Images

For nearly two decades, I’ve believed in and worked towards using digital tools as a means for people in the hardest-to-reach and low-resource communities to access health care and information. As people become more and more migratory due to political, climate, and other reasons, and with the proliferation of AI and digital tools in every aspect of our lives, I believe the need to bridge the digital divide is urgent and that we must ensure that the people who have the hardest time accessing health care and information can do so. 

However, if we cannot also ensure data privacy—particularly when it comes to sexual and reproductive health data and the ways in which these data make people particularly vulnerable—then increasing digitization only serves to put people who are already marginalized at greater risk. As the line between our physical and digital selves becomes increasingly blurry, sexual & reproductive data rights must be safeguarded as a key lever of bodily autonomy and gender equality.  

It was with this imperative top of mind, that Kati Collective reached out to Panorama Strategy to join forces to tackle this significant problem. Each of our organizations brings unique but complementary skills, relationships, networks, structures, and approaches to the table. We believe we can build a lasting solution—with informed expertise, support, and investment.

Together, we convened a curated group of thought leaders from the philanthropic, private sector, multi-lateral, and INGO communities to come together on the sidelines of UNGA 78 to discuss the complex and very critical issues surrounding digital rights, privacy, and sexual & reproductive health and rights (SRHR) data.

Our dinner guests included representatives from the Bill & Melinda Gates Foundation, C.A. Goldberg PLLC, Equality Now, Jhpiego, McGovern Foundation, Merck, Meta, Mozilla, Transform Health, UN Foundation/Universal Access Project, UNICEF, and UN Women.

It was an evening filled with engaging discussion and I look forward to advancing the insights and opportunities with this group and other aligned stakeholders. With that, I share the following high-level takeaways:

Building a case: The intersection of sexual/reproductive/gender and digital rights

Initiatives need to be tested and rolled out more slowly to prevent unintentional harm and ensure firm safeguards. Participants noted that we should continue to focus on the intersection of marginalized populations and mental health data, and that bodily autonomy is relevant to everyone, not just those who identify as female.

Digital literacy is key to safeguarding rights

Marginalized communities are targets for tech abuse which means that digital literacy is a critical component of this work. While we should not put the burden of data privacy entirely on the digital consumer, we must ensure that women and girls in LMICs are educated to understand the implications of their data being taken. We are accountable to act as agents for those who don’t have a voice in tech and educate them on the harms of misinformation.

The importance of multi-stakeholder engagement

For an intersectional-informed initiative, we need a myriad of diverse voices with both functional and lived experience. We must bring together government, private sector, and civil society (especially young people) to collaborate, exchange ideas, and agree on one set of overarching guiding principles. We must be equitable and forward-thinking to make ethical decisions and have flexibility in initiatives.

We must be nimble and adapt to the rate at which technology changes

We need to question and rethink how policy is formed so that it can keep up with the rate at which technology changes (as we all know, tech moves quickly, and policy moves slowly). By creating a body of case studies, we can educate and inform government at all levels, as well as national and international organizations.

Women and marginalized communities should be at the center of prevention and solutions. Currently, there are no governments or mechanisms holding people accountable for the impacts from tech abuse and artificial intelligence. This is not unsolvable, but agencies can’t keep up with the rapid rate of change.

Participants shared that they are hopeful the United Nations will move towards a data convention as well as creating a set of measures for documentation purposes. This is one area where we can’t bypass legislation. The EU is further ahead but we are hopeful the U.S. can catch up.

Messaging matters

There is a benefit to launching a campaign that focuses on centering people as digital beings and explaining the factors that lead to greater understanding on why this is important and why it matters. At present, many people, especially young people, do not pay attention to their digital rights.

We should consider more inclusive language around “bodily autonomy” and our rights as humans in a digital age as this term is more personal and speaks to an individual’s right to make choices for themselves.

There needs to be more public, first-hand accounts of the damage to individuals affected by this issue so that people understand that a violation of privacy rights can happen to any one of us.

The Opportunity

The group identified tangible immediate steps that can be taken to move this conversation and the work forward, including:

•  Conduct gap analysis of existing frameworks

• Review existing data rights frameworks and conduct a gap analysis of what other elements are required specific to SRHR data

• Develop a set of basic recommendations that can be used now by governments and implementers around a combined framework that includes SRHR recommendations

• Develop targeted communications/trainings for governments and implementers around the application of existing frameworks specific to SRHR data

•  Develop case studies across the lifecycle process as a digital user

• Develop a series of case studies which outline how data privacy related to SRHR impacts digital users across each stage in a digital user’s lifecycle (map to health lifecycle if possible)

•  Engage key stakeholders

• Use the development of the above products to begin engaging key stakeholders, understanding the full landscape, and laying the foundation to better understand what else is needed and how to continue to address this issue as technology and situations evolve

 Do you want to join us in this conversation?

We need a determined, passionate, and cohesive coalition to challenge the complex and vital issues surrounding digital rights, privacy, and sexual & reproductive health and rights data.

Are there are funders and stakeholders with whom we should connect? Could you provide an introduction? Perhaps you are interested in funding part of this work? Are there other frameworks, platforms, etc. that we should know about? Please contact us and help to connect the dots.

Creating an approach to ensuring SRHR data is secure and is not used against the very people who we aim to serve with our global health and development programs is critical to continuing to use digital approaches to solve some of our toughest global health issues. We hope you’ll join us!