True informed consent is more than a signed form; it’s an ongoing conversation. Ethical consent requires patients to understand:

• Purpose of Testing: Why it’s being done and what it aims to detect [1].
• Possible Outcomes: Positive, negative, and uncertain (VUS) results.
• Limitations: No test can detect all variants; false negatives are possible [2].
• Implications for Family: Results may have relevance for biological relatives.

When ordering broad tests like whole exome or genome sequencing, counselors explain the range of potential discoveries and reinforce that consent is dynamic, patients can revisit decisions as new information emerges.

• Incidental Findings: Unanticipated results unrelated to the original testing indication (e.g., discovering a BRCA1 variant during a cardiomyopathy panel) [3].
• Secondary Findings: Results deliberately sought beyond the original reason for testing, often limited to a specific gene list (e.g., the ACMG’s list of medically actionable genes) [4].

The ACMG recommends offering to return medically actionable secondary findings but also upholds a patient’s right to opt out of receiving such information. This choice must be clearly documented, reinforcing patient autonomy.

Genomic data is uniquely sensitive. Ethical challenges include:

• Data Ownership & Sharing: Patients should know how their data may be used in research or shared with databases [5].
• Legal Protections: In the U.S., GINA prevents health-insurance and employment discrimination but does not cover life or disability insurance. India currently lacks comprehensive genetic-discrimination laws.
• Data Security: Robust safeguards are essential to prevent unauthorized access or breaches.

Testing children for adult-onset conditions raises concerns:

• Autonomy: Children cannot consent; testing may impinge on their future right to decide [6].
• Psychosocial Impact: Knowing future disease risk can cause anxiety without immediate benefit.

Ethical consensus favors deferring predictive testing for adult-onset disorders until the individual can consent, while testing for childhood-onset or actionable conditions remains appropriate.

Genetic information often affects entire families and Genetic Counselors face dilemmas:

• Confidentiality vs. Duty to Warn: When a serious, preventable risk exists for relatives, counselors must balance privacy with potential harm to uninformed family members [7].
• Encouraging Disclosure: Genetic Counselors guide patients in sharing relevant findings, providing Genetic Counseling sessions for extended family, while respecting confidentiality.

Advanced genetic tests are unevenly accessible:

• Economic Barriers: High costs or lack of insurance coverage limit uptake [8].
• Geographic Disparities: Rural and low-resource regions may lack testing facilities.
• Cultural and Linguistic Gaps: Consent materials and counseling must be tailored to diverse populations.

Addressing these gaps is an ethical imperative to avoid widening health disparities.

Genetic counselors serve as ethical navigators by:

• Facilitating Informed Choices: Explaining complex information in patient-centred language.
• Supporting Autonomy: Respecting patients’ values and decisions, including opting out of certain information.
• Managing Uncertainty: Helping patients live with ambiguous or VUS results.
• Advocating for Equitable Access: Guiding underserved patients to available resources and financial assistance.

Genetic testing’s promise comes with ethical responsibility. By prioritizing informed consent, respecting autonomy around incidental findings, safeguarding privacy, and promoting equitable access, genetic counseling ensures that genomic medicine advances in a manner that honors individual values and societal fairness.