By: ERIC PERAKSLIS Representative light collective

Recently, despite decades of experience in cybersecurity, privacy, and data science, I was sent back to school.

as a member of the Council of the Wise light collectivea patient advocacy group focused on healthcare technology and privacy, I participated in a town Hall Titled “No Aggregation Without Representation”, the event invited four highly qualified leaders from BIPOC and the data advocacy community: Dr. Maya Rockeymore Cummings, Tia Tomlin-Harris, Jillian Simmons, JD and Valencia Robinson. I was unprepared for the ownership and authority of these four leaders—and how they could translate the professional truths I often convey to myself into something more personal, meaningful, urgent, and authentic.

The business practice of aggregating health and consumer data spans healthcare, retail, marketing, communications, transportation, and more. The risks and consequences (including misuse) associated with the exploitation and monetization of personal health data are large, complex, and largely or entirely borne by the individuals who are collecting the data—whether they know it or not.

What’s more, there is currently no cobbled together 3-letter federal regulator (Food and Drug Administration, Federal Trade Commission, Department of Health and Human Services, Federal Communications Commission) has terms of reference or resources to cover it all.Equipped with front internet Privacy Acts of the 1970s or with Insurance Portability Act Covering health and consumer privacy protection since the mid-1990s, a group of advocacy groups, ethicists, and academics identified issues and provided input.However, data has always been flow like oil come on surveillance economy Consumers and patients are exploited and harmed. For vulnerable communities, including BIPOC, and those with frailty, disability or mental illness, these injuries are not only real, but — given their tragic history — they are not surprising.

Deep Roots of Systemic Injury

During the town hall, panelists described a persistent lack of trust that has grown with issues such as Tuskegee Syphilis Experiment Beginning in the early 1930s and continuing through the early 1970s, without consent or from Henrietta lacks In the 1950s and used in thousands of experiments, and the continued stigma surrounding diseases such as HIV It’s as powerful today as it was in the 1980s. As I listened to the panelists, these events were no longer historical events to me, but current events unfolding before my eyes and profoundly impacting communities who knew they were being hurt and exploited for the sake of others Profitable.

But what are these hazards and who will feel their effects?Those who espouse the virtues and value of borderless data often argue that the benefits of the many outweigh the risks of the few, but when we’re talking about the large number of individuals in minorities and underserved communities, it’s not just the “minority” . In the past few weeks alone, we’ve read how data on people seeking help for suicidal ideation is being crisis text linesee solid proof of middleware ad tracking software Users can be tracked regardless of declared privacy policy on some health sites and witnessed another class action Misuse of personal biometric data against Meta (Facebook’s parent company).

Patient groups need rights. so what?

I once had a mentor who advised me to ask myself, “So what?” at least three times before deciding if an idea would stick. Let’s play the game with the wisdom shared by these four amazing leaders…

Dr. Rockeymore Cummings talks about how she shares part of her health journey story online to support others on similar journeys. But the end result of this sharing is that her insurance company claims that because she advocates preventive options, the procedures she goes through are selective and therefore deny coverage for those procedures. Where are the internet warning labels that remind consumers that the ideas and experiences they share online may be grabbed, reviewed and interpreted by their health insurance company?Interestingly, when the human genome was first mapped, scientists and ethicists helped ensure the passage of the human genome Genetic Information Nondiscrimination Act (GINA) because they foresee the potential for abuse when information about an individual’s genetic makeup becomes available. But no similar nondiscriminatory protections have emerged to cover the myriad other types of personal data available online over the decades of the internet. For surveillance capitalists, this situation is a feature, not a bug.

Data on patient populations is owned by the company. so what?

Today, we live in a world where the collective health data of any given patient group is owned by companies. What we share increasingly becomes part of our permanent public record. so what? What if I did say that and then I changed my mind? Or what if I sign up for a service that requires some of my data, but later decide I’m no longer interested, or worse, I’m worried about what I’ll learn as I get more familiar with the service manage? Jillian Simons points out that no state has passed a comprehensive “right “Forgotten” privacy protections, which would grant people the right to delete their personal data from specific and aggregated datasets. In addition to the obvious guarantees, this approach offers patients and consumers a very effective way to ensure that Responsible stewardship of data, even in large aggregated datasets. The right to be forgotten obliges dataset owners/aggregators to know where personal data resides and where it is shared; Can’t be deleted. “Evil smaht” as they say in my hometown of Boston.

so what?

If experiencing denial of care or maintaining personal autonomy when it comes to participating in a health website isn’t convincing enough, let’s take a look at the tougher issues.as our preprint Article (recently covered by Wired) shows that health sites are using — sometimes without even realizing it — Moderateeware that contains ad trackers. Ad tracking may not seem like something obviously harmful, but such trackers can aggregate astonishingly personal information from seemingly benign data. For example, if you use a carpooling app, your physical location may be shared across multiple platforms. Accessing Planned Parenthood using this ride-sharing platform, various inferences can be drawn. Data from multiple open browser windows on your phone can be aggregated to learn about your online purchases, the stores you frequent, the banking tools you use, the restaurants you visit—or when you’re at home waiting for pizza. At this point, the “so what” question should be thoroughly answered. Does all this still sound benign?

real world Data: Satisfied This real world harm

Pharmaceutical and digital health companies often tout the benefits of real-world data to improve population health. These data help make huge strides in our understanding of disease. We need real world data. However, without proper protection and management, this data is at risk and goes unprotected. All of this data and more, captured by stalkers, is spreading at epidemic proportions, with vulnerable groups being the most affected.a study in European Institute for Gender Equality It was found that 7 out of 10 women who experience cyberstalking in Europe are also victims of intimate partner violence. According to the report, the digital control exercised by stalkers can be enormous: read anything of the type of person being monitored, including usernames and passwords for services such as banking apps, online stores and social networks; track their movements in real-time via GPS , know where the person is; wiretap or even record, even audio recordings; read text messages (with or without encryption); monitor social network activity; view photos and videos; and even turn on the camera.

Another survey showed that 85% of domestic violence workers Reports have taken care of attackers locating their victims via GPS. also, Statistical data Research on the detrimental impact of Internet crime on racial and ethnic minorities shows that BIPOC communities face identity theft more often, social media accounts are more frequently attacked in BIPOC communities, and older adults are more likely to be targeted than those under 65.Simply put: the more fragile Yes more fragile.

So why do we say “there is no aggregation without representation?” This is not an abstract ethical question about privacy or even autonomy. This is the right to be safe. The right to feel safe.This makes it no less than a civil rights.

This concept of collective rights, representation, and governance of real-world health data is just beginning. Those of us with power, privilege and influence in healthcare have a responsibility to listen and act. So what happens next?

This incredible group will be National Health Policy Conference April 4-5 in Washington, DC. I hope you can join them. Thank you Dr. Maya, Ms. Tomlin-Harris, Ms. Simmons and Ms. Robinson. I promise I won’t forget what I’ve learned.

Dr. Eric D. Perakslis (@eperakslis) Is an Rubinstein Fellow at Duke University.