The Evolving Landscape of Genetic Counseling: Trends and Future Directions for Professional Standards and Ethical Guidelines
Understanding the Scope of Practice (SOP) in Genetic Counseling
In genetic counseling, a well-defined Scope of Practice (SOP) is essential. It outlines the specific knowledge, skills, and experience practitioners need to practice lawfully, safely, and effectively, thereby ensuring public safety. Globally, SOPs vary but share a common goal: to uphold professional standards and apply evidence-based practices. This foundational framework allows genetic counselors to maintain high-quality services.
Globally, the development of genetic counseling profession is led by organizations like:
United States: NSGC (1979)
United Kingdom: AGNC (late 1980s).
EBMG 2012, 2014, GCRB 2019.
Europe : EBMG (2012, 2014).
South Africa: Southern African Society for Human Genetics (Early 1990s).
Asia: BGC (2015)
While the Association of Genetic Nurses and Counsellors (AGNC) in the UK was established in the late 1980s, linking accredited local training programs to their registration systems under the Academy of Healthcare Sciences (AHCS) in, and the European Board of Medical Genetics (EBMG) became a legal entity in 2014
Isreal and Saudi Arabia have their own national GC regulation systems
In South Asia, Japan founded the Japanese Society of Genetic Counselors in 2001, and Malaysia, Singapore, China, Thailand, South Korea, Africa are in their infant states in GC development.
The SOP outlines professional responsibilities and ensures consistent practice across different settings. Yet, it also reflect cultural and regulatory variations across countries. The Code of Ethics (COE) complements the SOP by providing guidelines that underline the profession’s goals, values, and standards. Together, they ensure genetic counselors act ethically, building trust and accountability. Most recognized professions globally share similar COEs, which typically consists of:
- Ensuring personnel responsibilities for continuing education, integrity and accountability.
- Practicing in cooperation with other professionals.
- Complementing others like inclucling public education.
| Region/Country | Year Established | Key Programs/Initiatives |
|---|---|---|
| United States (US) | 1979 | NSGC, Allowed to order tests without supervision. |
| United Kingdom (UK) | Late 1980s | ACGN Genetic Counsellor Registration Board (GCRB), 2019 CAP-controlled. |
| Australia | 1993 (NSGC/Australasia) |
Ordered tests without supervision. |
| Canada | Varies | Medical Geneticists/Test Ordering Confusion. |
| Japan | 2001 | Including Whole Genome Sequencing Programs. |
| China | 2015 | Chinese Board of Genetic Counsellors. |
The Controversy over Genetic Test Ordering
One of the most contentious aspects of genetic counseling is the ability to order genetic tests. In the US, for instance, genetic counselors in 13 states can order tests, but this comes with ethical and legal implications. In countries like Canada, genetic counselors often need a co-signature from a medical geneticist, which can introduce delays and inefficiencies.
Globally, the miscalculations and costs associated with genetic test so often exists as its seen too that while ordering genetic tests themselves costs, test management /ordering guidelines play a role
Test Misorders Example: A US study showed a 26% change by genetic counsellors.
Such practices highlight the need for clear SOPs and training frameworks to ensure appropriate test ordering.
Striving for Shared Decision-Making Models
In an era of genomic medicine, the traditional non-directive model of genetic counseling is evolving. Patient-centered approaches are becoming more prevalent, emphasizing shared decision-making. This shift allows genetic counselors to support clients by providing necessary information while respecting their autonomy in decision-making.
Nonetheless, this approach requires patients to have a high level of knowledge of personal protections and intelectual legal psyschological health as research education remains unclear.
In Australia, where genetic counselors play a significant role in ordering tests and working with multidisciplinary teams, there’s growing interest in leveraging this expertise for broader patient care.