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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.

Mental health

Yoga and omega-3 as effective as therapy for depression in pregnancy, research finds

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Yoga and omega-3 supplements may be as effective as talking therapies for pregnancy depression, a major review suggests.

Globally, nearly one in three pregnant women experience depression, but most receive no treatment.

When support is available, women are often directed towards talking therapies such as cognitive behavioural therapy, or CBT, and mindfulness.

CBT is a structured talking therapy that helps people identify and change patterns of thought and behaviour affecting their mental health.

The review examined 115 clinical trials involving more than 12,000 participants across 30 countries.

It found that yoga, massage, omega-3 supplements and bright light therapy were broadly as effective as talking therapies at reducing depression symptoms during pregnancy.

Bright light therapy involves controlled exposure to bright light and is sometimes used to treat mood conditions.

The findings point to the importance of social support and increased connection, as all these approaches offer some element of contact or guided support.

Led by King’s College London, the research brought together trial evidence across every type and format of treatment for antenatal depression under a common framework.

Antenatal depression is depression that occurs during pregnancy.

The study was conducted as part of HappyMums, a European consortium led by the University of Milan that aims to improve mental health support during pregnancy and after birth.

Carmine Pariante, professor of biological psychiatry, said: “This is the most comprehensive analysis of treatments for depression in pregnancy ever conducted, and the findings should prompt a rethink of how we support women during this critical period.

“The evidence is clear that there is no single best approach. What matters is that women have access to a range of options, and that clinicians feel equipped to offer them.”

The researchers said yoga and omega-3 supplements could be legitimate treatment options, rather than stopgaps, for women on waiting lists or those who struggle to access mental health support.

However, the studies differed considerably in design, sample size and how results were measured, so the findings should be interpreted with care.

The team said non-psychological approaches could help women cope with long waits for care without ruling out other treatments alongside them.

Digital and online interventions, including apps and telephone-based support, were also found to be as effective as face-to-face treatment.

Researchers said this could affect how antenatal depression is managed, particularly for women who cannot travel or face long waits for in-person care.

The team found no randomised controlled trials of pharmaceutical treatments for antenatal depression, despite antidepressants being widely prescribed for depression outside pregnancy.

A randomised controlled trial is a study in which participants are randomly assigned to different treatment groups, allowing researchers to compare outcomes more fairly.

Evidence for drug treatment during pregnancy therefore relies on indirect research rather than trials carried out during pregnancy, reflecting long-standing caution around testing medicines in pregnant populations.

NICE guidelines recommend antidepressants for moderate to severe depression in pregnancy, while evidence from outside formal pregnancy trials suggests they can be safe and effective.

However, the researchers said trials are still needed, particularly for women who cannot access or engage with other forms of support.

Riddhi Laijawala, trial manager and PhD student, said: “Depression in pregnancy is common, but it is not inevitable, and it is treatable. What this review shows is that the options available to women are broader than many people realise.

“A yoga class, music therapy, or an online programme may not sound like clinical treatment, but the evidence suggests they can make a real difference, and for many women they may be easier (and quicker) to access than a course of therapy.”

Depression during pregnancy affects an estimated 28.5 per cent of pregnant people worldwide, but only around one in five receives appropriate and timely treatment.

The team said closing this treatment gap should be a priority for health systems because the condition can affect both parent and child.

The HappyMums project is supported by the European Union’s Horizon Europe research and innovation programme.

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Hormonal health

Type 2 diabetes rising among young women, experts warn

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Type 2 diabetes is rising among women in their 20s in England, with experts warning of a worrying increase since the Covid pandemic.

The rise has largely occurred since the pandemic and is closely linked to increasing obesity levels, according to an analysis of NHS data from 2011 to 2024.

The condition is serious and can lead to severe complications, including heart attacks and strokes.

Diabetes UK said it tends to be more aggressive when it develops at a younger age, raising the risk of serious complications and shorter lives.

The charity said early diagnosis is vital for people at risk to help prevent long-term organ damage.

The condition can sometimes be put into remission through healthy eating and maintaining a healthy weight, without relying on glucose-lowering medicines.

Researchers said newer obesity treatments, including GLP-1 injections and pills, may also help alongside healthy eating advice.

About 90 per cent of the six million people living with diabetes in the UK have type 2 rather than type 1, or insulin-dependent, diabetes.

The risk increases with age, and older adults still account for the largest proportion of new diagnoses.

However, NHS England estimates suggest that 12,000 people under 30 are now living with the condition, with women making up more of the younger cases.

Common symptoms include feeling very tired, urinating more often than usual and feeling thirsty all the time.

Researchers at Imperial College London analysed NHS data from the English National Diabetes Audit to examine trends over time.

The figures showed that cases are falling slightly among older adults, who still account for the largest share of new diagnoses.

However, diagnoses are increasing rapidly among people under 40, with some of the sharpest rises among women aged 20 to 29.

Body mass index at diagnosis has also been rising more quickly among younger adults than in older age groups, pointing to obesity as a likely factor.

Body mass index, or BMI, is a measure of obesity based on a person’s height and weight.

Separate NHS data for England shows obesity rates have worsened since the pandemic, with nearly one in three people now affected.

The largest increases over time have been among younger adults.

Between 2019 and 2025, new obesity cases rose by 16 per cent among people aged 20 to 29 and by almost 20 per cent among those aged 30 to 39.

Rates fell among adults aged 60 to 79 over the same period.

Lead researcher Dr Shivani Misra said: “We think that the earlier onset of severe obesity in young people is increasing their type 2 diabetes risk in early life and pulling down their age at diagnosis.

“This is really worrying given the poor health outcomes from early-onset type 2 diabetes.”

Misra said much of the discussion about rising rates among younger people had focused on ethnic minority groups, which have traditionally been considered at higher risk.

However, the new data suggests the trend extends well beyond those communities.

She added: “We now see that incidence is also increasing in white populations too, showing that this public health challenge is broadening across the generations.”

Diabetes UK said better follow-up care is also needed for mums-to-be diagnosed with gestational diabetes during pregnancy because it raises the risk of developing type 2 diabetes after childbirth.

Some studies have suggested that the risk of developing the condition may also increase after being ill with Covid, although the evidence remains inconclusive.

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Wellness

AstraZeneca drug approved for breast cancer in EU

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AstraZeneca’s breast cancer drug Etcamah has been approved in the EU as part of a combination treatment for advanced disease.

The European Commission acted on a positive opinion from the Committee for Medicinal Products for Human Use, the Cambridge, England-based drug maker said.

The decision followed positive results from the Serena-6 phase III trial, which showed a 56 per cent reduction in the risk of disease progression in advanced oestrogen receptor-positive breast cancer.

A phase III trial is a large, late-stage study used to assess a treatment’s safety and effectiveness before wider regulatory approval.

Oestrogen receptor-positive breast cancer is a form of the disease that can grow in response to the hormone oestrogen.

Etcamah, whose generic name is camizestrant, was tested in combination with a cyclin-dependent kinase 4/6 inhibitor.

Known as CDK4/6 inhibitors, these medicines block proteins that help cancer cells grow and divide.

AstraZeneca said the Etcamah combination has also been approved in Japan, the UAE and Saudi Arabia based on the Serena-6 trial results.

The company said breast cancer remains the leading cause of cancer death among women in Europe, with more than 140,000 deaths and more than 540,000 patients diagnosed in 2024.

AstraZeneca shares were down 0.6 per cent at 12,628 pence in London on Thursday.

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