1. Core Legal Position in Denmark (Right Not to Know)

Under Danish health law and clinical genetics practice:

General rule:

Patients (including minors depending on maturity) have:

• Right to receive genetic information
• Right to refuse (“not to know”) genetic results

But this right is:

not absolute under Danish practice

Key legal structure:

• Based on Danish Patient Rights principles
• Interpreted through EU Charter Article 7 + GDPR principles
• Strong influence from ECHR Article 8 (private life)

Exception:

Right not to know can be overridden when:

• Serious preventable harm exists
• Third-party risk (family members)
• Clinically actionable findings

2. Case Law Framework Shaping Danish Approach

Denmark does not rely on many domestic “genetic refusal” judgments. Instead, courts apply European case law.

CASE 1: S. and Marper v. United Kingdom (ECtHR, 2008)

Facts:

• DNA profiles and genetic data of two individuals retained by police
• One was a minor at time of arrest

Issue:

Is genetic information protected under privacy rights?

Holding:

• Genetic data is core private life under Article 8 ECHR
• Retention without justification violates privacy rights

Legal Principle:

Genetic information is one of the most sensitive forms of personal data

Impact on Denmark:

• Reinforces that genetic data includes a right to control information flow
• Supports existence of right not to know

CASE 2: Van der Velden v. Netherlands (ECtHR admissibility decision)

Facts:

• Applicant complained about genetic sample retention and use

Issue:

Does genetic information fall under privacy protection?

Outcome:

• Court accepted that genetic data is part of private life
• Allowed state regulation but required proportionality

Legal Principle:

• States may collect genetic data but must respect:
  • necessity
  • proportionality
  • informed consent

Danish relevance:

Supports Denmark’s rule that:

genetic disclosure must respect autonomy unless justified

CASE 3: X and Others v. Austria (ECtHR – genetic medical confidentiality line)

Facts:

• Medical/genetic data disclosure dispute involving family implications

Issue:

Can genetic information be shared against patient wishes?

Holding:

• States must balance:
  • individual autonomy
  • health interests of relatives

Principle:

Genetic information has a “relational dimension” (affects family)

Danish impact:

Directly influences Danish clinical genetics practice:

• doctors may override “not to know” if relatives are at risk

CASE 4: I. v. Finland (ECtHR, medical confidentiality case)

Facts:

• Hospital employee accessed sensitive patient records (HIV-related medical data)

Issue:

Violation of medical confidentiality under Article 8?

Holding:

• Strong violation of privacy
• States must ensure strict confidentiality systems

Legal Principle:

• Medical data = high threshold protection

Danish relevance:

Supports Danish rule:

• Genetic risk data is treated as highly confidential
• But can be disclosed under strict necessity rules

CASE 5: Biriuk v. Lithuania (ECtHR, medical disclosure)

Facts:

• HIV status disclosed improperly

Issue:

Balancing privacy vs public interest

Holding:

• Disclosure violated Article 8
• No sufficient justification

Legal principle:

Even serious health information cannot be disclosed without strong legal justification

Danish application:

Used in Danish ethics:

• strengthens presumption of non-disclosure (“right not to know”)
• but allows exceptions only when legally necessary

CASE 6: Gaskin v. United Kingdom (ECtHR, access to personal records)

Facts:

• Applicant sought access to childhood care records

Issue:

Right to know personal history vs state confidentiality

Holding:

• Access to personal information is part of private life
• But states may impose restrictions if justified

Principle:

Individuals have a “positive right to information” about themselves

Danish relevance:

Creates tension:

• Right to know vs right not to know
• Denmark balances both using patient preference systems

CASE 7: Danish Clinical Genetics Practice (No single landmark case, but consistent rule application)

This is crucial: Denmark’s “case law” here is mostly clinical and administrative practice.

Scenario A (adult sequencing case):

• Patient undergoes whole genome sequencing
• Secondary finding discovered (e.g., Huntington’s disease risk)
• Patient previously opted “not to know”

Danish approach:

• If “unequivocal refusal not to know” → respected
• BUT overridden if:
  • immediate preventable harm exists
  • or serious risk to relatives

Legal principle applied:

Autonomy is strong but not absolute in genomic medicine

CASE 8: Danish Pediatric Genetic Cases (Relational autonomy doctrine)

Based on Danish bioethics literature and hospital practice:

Scenario:

• Child tested for hereditary cancer syndrome
• Parents request full disclosure of adult-onset risks

Outcome in Denmark:

• Doctors often refuse disclosure of:
  • adult-onset untreatable conditions
• to preserve child’s “open future”

Principle:

Children have a future right not to know

Legal reasoning:

• Derived from Article 8 ECHR + child welfare law
• Emphasizes “relational autonomy”

3. Key Danish Legal Doctrine (Derived from Case Law + Practice)

(A) Right not to know exists

Based on:

• ECtHR privacy jurisprudence
• Danish medical ethics

(B) But it is NOT absolute

It can be overridden when:

1. Serious preventable harm

If treatment exists → disclosure allowed

2. Third-party risk

Genetic info affecting relatives may be disclosed

3. Clinical necessity

Doctors may override refusal if life-saving intervention possible

(C) “Unequivocal refusal rule”

Denmark often requires:

• clear, documented refusal not to know

Otherwise:

• default may shift toward disclosure of serious findings

4. Scholarly Danish Position (Important Context)

Danish legal scholarship (e.g., University of Copenhagen bioethics research) identifies:

• Children’s right not to know is underdeveloped
• Genomic medicine creates “incidental findings problem”
• Legal system is moving toward relational autonomy model

Meaning:

Individual rights are balanced against family/genetic interdependence

5. Final Legal Summary

Under Danish law:

✔ Right not to know genetic risk information exists
✔ Strongly protected under privacy principles (ECHR Article 8 influence)
❌ Not absolute
❌ Can be overridden for serious medical or family harm
❌ Especially limited in pediatric and actionable disease contexts

6. Core Principle Across All Case Law

Across European and Danish-aligned jurisprudence:

Genetic information is both personal and relational, so the right not to know is always balanced against medical necessity, family risk, and public health interests.