Discuss the ethical issues in predictive genetic testing for hereditary diseases.

Predictive genetic testing reads a healthy person's inherited (germline) DNA to estimate future disease risk. An example is testing for BRCA1/2 variants that raise breast and ovarian cancer risk. GenomeIndia has now opened about 10,000 Indian genomes to researchers [1]. The ethical question is therefore no longer whether India can test, but how it should.

Ethical case for testing

• Beneficence: a carrier identified early can choose closer surveillance or preventive surgery.
• Equity in science: Indian reference genomes reduce dependence on Western data [1].

Ethical issues

• Autonomy and informed consent: risk results are probabilities, not certainties. Consent without pre- and post-test genetic counselling is not truly informed. The ICMR National Ethical Guidelines (2017) cover counselling, consent and the return of results [2].
• Genetic determinism: a variant is not a diagnosis. WHO notes that only about 10% of children with cancer have a genetic predisposition [3]. Variants of uncertain significance cause anxiety without giving a clear course of action.
• Privacy and discrimination: genetic data cannot be changed and also exposes relatives. Informational privacy is part of Article 21 (Puttaswamy, 2017) [4]. The DPDP Act, 2023 requires consent-based processing of data [5]. However, India has no dedicated law against genetic discrimination by insurers or employers.
• Family dilemma: one person's result reveals their relatives' risk. This sets the duty to warn against confidentiality and the relatives' right not to know.
• Minors and reproduction: testing children for adult-onset disease takes away their future choice. Prenatal use risks sliding into eugenic selection and marriage-related stigma.
• Distributive justice and misuse: costly tests reach mostly urban, insured patients. Misuse of genetic technology is a recognised risk [2].
• Data governance: GenomeIndia data is shared under the Biotech-PRIDE Guidelines and FeED protocols, which control who can access it [1].

Way forward

• Mandatory counselling and accredited laboratories, as set out in ICMR norms [2].
• A statutory ban on genetic discrimination, with genetic data treated as sensitive personal data.
• Targeted cascade testing of high-risk families instead of unregulated direct-to-consumer kits.

Predictive testing is neither good nor bad in itself. Its ethical worth depends on consent, counselling, confidentiality and fair access. A rights-based framework rooted in Article 21 dignity and SDG 3 can let India use genomics for prevention without treating genes as destiny.