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Opinion

Acceptable use vs exploitation with ‘free’ digital health tools

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By Wolfgang Hackl, CEO, OncoGenomX Inc., Allschwil, Switzerland

“Free” digital health tools are rarely free. In most cases the user – healthy or patient – pay with something far more valuable than a subscription fee: intimate, high-granularity data about their bodies, behaviours, and vulnerabilities.

As digital health platforms grow into critical infrastructure for care, research and consumer wellness, a central ethical question has become unavoidable: When does data use enable public good – and when does it cross the line into exploitation?

Across global literature, five bright lines consistently separate acceptable data use from irresponsible or predatory practices: transparency, proportionality, patient control, fairness in value sharing, and protection from harmful downstream uses.

When any of these conditions are missing, offering a “free” tool can become a mechanism for extracting disproportionate value from users while outsourcing the risks back onto them.

The ethics of the deal: what healthy users and patients expect from data sharing

Empirical studies continue to show that most people are willing to share health data – but only conditionally.

Individuals support sharing when data clearly contribute to research, treatment innovation, care quality, or public health.

Trust erodes quickly when data are used for insurance underwriting, targeted advertising, pricing segmentation, or other uses that may limit access to care or worsen financial vulnerability.

What users consistently expect is:

  • Clarity – Who sees which data, for what purpose, and for how long?
  • Control Granular permissions and an easy, meaningful opt-out—not buried legalese.
  • Security – Strong technical safeguards and independent oversight.
  • Benefit – A reasonable expectation that sharing data contributes to something of social or personal value.

Several commentaries argue that requesting personal data without a realistic prospect of benefit—not even transparency about outcomes – is itself problematic because it treats contributions as limitless and one-sided.

The ethical legitimacy of data collection depends on demonstrating respect for the individual’s time, autonomy, and moral investment in the health system.

Exploitation risks in the “free” digital health economy

The most serious risks emerge when a free tool’s business model is fundamentally misaligned with users’ health interests.

Technical audits of reproductive health, wellness and symptom-tracking apps show a common pattern: extremely broad data collection, unclear purpose boundaries, permissive permissions, third-party tracking, and vague categories such as “other information.”

These form the architecture of a data extraction engine rather than a health intervention.

Even apps claiming to hold only de-identified data can open the door to harms, because de-identified health behaviour signals are immensely valuable for:

  • Risk scoring and pricing (insurance, consumer credit, employment screening)
  • Targeted advertising (particularly manipulative or sensitive targeting)
  • Behavioural profiling (including in politically or legally hostile environments)
  • Opaque algorithmic triage or eligibility decisions

In such cases, the user’s data generate significant commercial value yet expose the individual to disproportionate risks – a classic hallmark of exploitation.

The “paying twice” problem: who benefits from population data?

Growing debate around emerging health data spaces – especially in Europe – frames exploitation not only as a privacy issue but as a structural market failure.

Health data are immensely profitable. When commercial actors derive outsized value from population-level datasets without mechanisms to share those gains back with the public, patients effectively “pay twice”:

  1. First with their data, which fuel product development, risk models, or AI systems.
  2. Then again through the high prices of those very products and services.

This disconnect – value extracted privately, risk borne publicly – undermines the legitimacy of the entire ecosystem.

Scholars argue that without reciprocity mechanisms (affordability conditions, public-good obligations, reinvestment requirements, open reporting), population data becomes a one-way transfer of wealth from patients to shareholders.

What acceptable data use actually looks like

Across policy, legal, and ethics scholarship, a consistent set of practical markers has emerged to distinguish responsible data practice from exploitation:

1. Transparency and comprehension

Not merely posting a 30-page privacy policy, but communicating data practices in human-readable language.

Dark patterns, forced consent, or ambiguous categories (“other information”) are widely flagged as red flags.

2. Data minimisation and proportionality

Collect only what is needed for the clear, stated purpose. Health apps that request location, contacts, device IDs, access to photos, or continuous background tracking must justify why such access is necessary for patient benefit.

3. Meaningful patient control

Granular consent, revocation options, and controls that do not punish users for refusing unnecessary data sharing.

Users should be able to say “yes to research but no to advertisers” without losing core functionality.

4. Demonstrable public benefit and reciprocity

Data-driven innovation should return value to the communities who generate the data—through equitable access, affordability, improved care pathways, or transparent reinvestment in health systems.

5. Prohibitions on harmful downstream uses

Platforms must enforce technical and contractual safeguards against uses that could lead to discrimination, exclusion, legal jeopardy, or personal harm – especially in sensitive domains such as reproductive health, mental health, and genomics.

6. Strong security and independent governance

Routine audits of algorithms, permissions, data flows and third-party access; oversight bodies empowered to block or penalise inappropriate secondary use; and governance models built around public accountability.

When these markers are present, data use—whether in research, diagnostics, early detection, or population analytics – can be socially valuable and ethically defensible.

When they are absent, value extraction becomes the default.

Where the industry must go from here

For global Health Tech companies, the stakes are high. Trust is not just a compliance objective – it is a competitive advantage.

As jurisdictions develop new frameworks for data spaces, AI governance, and platform accountability, Health Tech innovators must rise to higher ethical standards than the minimal legal baseline.

A responsible future for digital health requires that “free” tools come with:

  • Clear limits on what patient data can be used for
  • Oversight mechanisms to validate secondary uses
  • Fair distribution of the benefits of data-driven innovation
  • Design practices that prioritize patient autonomy and safety

Anything less risks widening inequities, damaging public trust, and ultimately undermining the legitimacy of digital health itself.

The real test of the industry is simple: Are we using patient data to empower people – or to exploit them?

The next decade of digital health will be shaped by how honestly and rigorously we answer that question today.

Opinion

At-home ovulation test nearly as accurate as ultrasound, research finds

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A new clinical study has found that an at-home device for tracking reproductive hormones can identify ovulation with an accuracy that closely matches hospital-grade ultrasound scanning, in what researchers describe as a significant step for women’s health technology.

The findings, published this week in Reproductive BioMedicine Online, come from an 18-month trial led by Dr Thomas P. Bouchard that followed 121 ovulatory cycles and included 890 transvaginal ultrasound scans. 

The study compared results from the Mira at-home hormone monitor, which tracks four hormones through urine samples, against the two methods long considered the clinical gold standard: ultrasound-confirmed ovulation and blood serum testing.

Researchers found that the day of ovulation, as confirmed by repeated ultrasound scans, fell within a day of the peak in luteinising hormone (LH) detected by the device in 96 per cent of cycles studied.

A new benchmark after 25 years

The study’s authors say it represents the first time a quantitative, multi-hormone at-home monitor has been validated against blinded ultrasound scanning under STARD guidelines, the internationally recognised standard for reporting diagnostic accuracy research. 

Existing consumer fertility trackers, they note, have largely relied on simpler yes/no hormone readings or date-based algorithms that have gone unchanged for a quarter of a century.

The device tracks four hormones: LH, the oestrogen metabolite E13G, the progesterone metabolite PDG, and follicle-stimulating hormone (FSH).

What the data showed

Alongside the headline ultrasound comparison, researchers reported several other findings:

  • Blood test correlation: readings from first-morning urine samples closely tracked blood serum levels drawn within 90 minutes, with the strongest correlation for LH, followed by progesterone and oestrogen metabolites, and a weaker but still notable link for FSH.
  • Hidden variability in “regular” cycles: even among participants with typically regular periods, 11 per cent of cycles were found to be anovulatory, meaning no egg was released. In a further 12.4 per cent of cycles, ovulation occurred while LH was still climbing rather than after it peaked – a pattern researchers say calendar-based apps and single-day tests would likely miss.
  • Earlier warning of fertility window: rising oestrogen signals were detectable roughly five to six days before ovulation, reflecting the natural development of ovarian follicles and offering an earlier indication of the fertile window than LH tracking alone.

‘Precise biological data without the clinic visits’

Dr Bouchard, the study’s lead author, said the research set a new bar for evaluating consumer fertility devices.

“For over two decades, at-home fertility tracking was based on qualitative indicators without providing quantitative hormone values,” he said, adding that testing the device against nearly 900 ultrasound scans under a blinded protocol gave the field a rigorous new benchmark.

Sylvia Kang, founder and chief executive of Mira, said the results pointed to a broader shift in how reproductive health could be monitored.

“Women deserve precise biological data about their reproductive health without needing constant clinic visits and serial blood draws,” she said, describing the findings as evidence that at-home testing could deliver “clinic-grade hormonal visibility.”

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Opinion

Why health AI needs to read between the lines

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Sahar Abid is a Science Associate at Ema EQ, where she works on cultural sensitivity and bias in AI.

A woman asks an AI health assistant about postpartum depression.

She mentions that her in-laws are telling her to “push through” and skip medical help, even as her symptoms get harder to manage. She never says where she is from or names her background.

The assistant describes the condition and gives her a hotline number. It sounds correct, but it misses what she needs.

That gap is more common than the industry admits, and it points to a blind spot in how we test health AI for bias.

Most bias testing looks at what people explicitly say.

The typical way to check an AI for bias is to label a prompt with someone’s demographic details and see if the answer changes. That catches some problems but misses a bigger one.

Most people do not lead with their identity. They lead with their situation. The woman above told the assistant everything it needed to help her, just not in the form of a label.

Her real question was not only “what is postpartum depression?” It was “how do I get care when the people around me don’t want me to?

When family members hold sway over health decisions, and in many communities they do, advice that asks someone to overrule their family is not something they can act on.

The AI didn’t say anything factually wrong. It answered a different question than the one she was living.

We call this culturally implicit bias, meaning the AI misses the cultural context a situation implies rather than the context a person spells out.

When systems are trained to notice only the explicit cues, they fall back on a default answer built for the majority. For everyone else, the response can feel generic, off-target, or discouraging enough that they stop looking for help.

In health, that is not small. The people most likely to be missed are often the ones the system already underserves.

What we set out to test.

At Ema, we wanted to know how well AI picks up on cultural context that is implied but never stated. So we built our own way to test for it, across a range of communities and real situations like postpartum depression and fertility, using questions that carried cultural meaning without announcing it.

The patterns were consistent. Models often missed the meaning underneath the question. They dropped the specific details a person did share and smoothed them into something generic.

And even when they pointed toward real care, they tended to offer one option instead of choices that might actually fit a person’s life. Any one of those can be the difference between someone following the advice and walking away from care.

Why this matters for anyone building health AI.

Getting this right is the right thing to do, and it also works better.

When an answer reflects a person’s real context, people trust and act on the recommendations more, so they get the help and support they need.

Testing for it is harder than the shortcut most teams use. Swapping a name or a demographic label in and out is easy. Checking whether a model actually understands the human context around a question takes more care.

The shortcut teaches models to perform cultural competence instead of practicing it. No matter how much or how little someone chooses to share, they deserve an answer that is warm, complete, and usable.

A better question.

The bar for equitable health AI should be “does it serve someone who never told you who they are?” It is the harder test, but it determines whether real people get help.

The work of getting there is far from finished, and it is exactly what we are building toward at Ema.

Sources: Naidoo, V., & Chadha, K. K. (2025), Culturally responsive AI chatbots: from framework to field evidence, Computers in Human Behavior: Artificial Humans. Souligne, N., & Subbian, V. (2026), FairLogue: A toolkit for intersectional fairness analysis in clinical machine learning models.

Learn more about Ema EQ

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Opinion

anna perimenopause app launches across 39 markets

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A perimenopause app that maps existing smartwatch data to the menopausal transition has launched across 39 markets in the UK and Europe.

anna app uses information already recorded by wearables, including sleep, heart rate and body temperature, and returns one suggested lifestyle action each morning alongside the research behind it.

The company says each rule in its library links a defined pattern in a woman’s own data to a specific action. The recommendations were developed with an advising clinician and draw on more than 300 published studies.

The company says recommendations are not generated automatically and each can be traced to research reviewed by a doctor.

The app was built by two women in Riga, has been funded without outside investment and was tested with women in the UK over three months before launch.

Perimenopause is the period of hormonal change before periods stop and usually begins after 40.

The company says one of the challenges is the unpredictability of the transition, with sleep, energy, mood and concentration potentially changing from week to week.

Because the experience varies between women, the developers say it can be difficult to find care tailored to individual needs. After 45, there is also no reliable blood test to confirm perimenopause.

The transition can coincide with a busy period in women’s working lives.

CIPD research published in 2023 found that 27 per cent of working women aged 40 to 60 with menopause symptoms said they had affected their career progression, equivalent to around 1.2m women in the UK.

Some 79 per cent said they felt less able to concentrate.

The long-running Study of Women’s Health Across the Nation, which has followed thousands of women through the menopausal transition, found that cognitive difficulties reported during perimenopause appear to be time-limited, with improvement returning in early postmenopause.

The developers say anna differs from standard wearable data by interpreting measurements specifically in the context of perimenopause.

A smartwatch may show changes in sleep, heart rate or temperature, but anna is designed to look at combinations of those signals and link them to lifestyle guidance for that day.

The app is also designed to work without daily symptom logging.

Users can complete an optional daily check-in if they want to add more context, but the app can operate without a symptom diary or daily manual entries.

It uses information from a compatible device the user already owns, such as a watch, ring or band.

Elina Pika-Lepere, co-founder and chief executive of anna app, said: “Perimenopause arrives exactly when a woman has the least spare capacity. She is often at the peak of her career, raising children, caring for ageing parents. What she has lost is not information, it is predictability.

“We built anna to offer a helping hand and evidence-based guidance through a stage that is difficult but temporary.”

The company gave the example of a morning when a user’s watch shows she has slept well below her own 28-day average.

Rather than simply telling her she is tired, anna may suggest choosing one priority and working on it in 25-minute blocks with a short break between them.

The app also displays the sleep and concentration research used for the recommendation.

anna was founded by Pika-Lepere, who spent 15 years building products in advertising, retail and e-commerce, and product lead Zanda Freimane, whose background is in product management in fintech and e-commerce.

The wider team includes a mathematician and university researcher advising on data architecture, a senior developer and a user experience adviser from a Baltic unicorn company.

anna app is not a medical device and does not provide medical advice.

Its guidance is limited to lifestyle support, and the company describes the app as a tool to complement a doctor rather than replace professional medical care.

anna app is available on iOS across 39 markets in the UK and Europe and is listed on the App Store as anna: Perimenopause & Sleep.

The app is in English and works with Apple Watch, Garmin, Fitbit, Oura and Whoop through Apple Health.

The company says user data is hosted in the EU and is never sold.

The service costs £13.99 a month or £99.99 a year in the UK and €14.99 a month or €99.99 a year in the euro area after a seven-day free trial.

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