Did we ever ask ourselves these questions??
Lets go get some answers!!!
Look at the evolution of term “Genetic Counseling”. It was first used by scientist Sheldon Reed in 1947. This was six years before the structure of DNA was discovered. The first half of 20th century had seen the Eugenics movement.
What is the relation between Eugenics and Genetic Counseling ?
The practice of advising people about inherited traits began around the turn of the 20th century, shortly after William Bateson suggested that the new medical and biological study of heredity be called “genetics. Heredity became intertwined with social reforms when the field of modern eugenics took form. Eugenics was based on the belief that some groups of people are born better than others . This belief was used by govts in terrible ways. The most infamous example of eugenics is Holocaust. However other countries (including the UK and the USA) had policies based on Eugenics. This trend indirectly had its influence on genetics as reproduction was the main focus in early years.
Who opposed eugenics from influencing Medical Genetics ?
Sheldon Reed – He didn’t want medical Genetics to be based on eugenics. He along with others, wanted genetics to be patient -centered. This means he wanted it to focus on the psychological well being of families. Reed’s concept of Genetic Counseling focused on empowering families. He wanted to do this by providing them with accurate information. As such the term “Genetic Counseling” was designed to deliberately distance Genetics from eugenics. Reed felt that patient encounters could be described as a “Kind of Genetics social work without eugenic connotation”.
Medical Genetics became a more established Field of medicine. People like Sheldon Reed had tried to distance Genetics from its eugenics past. However Genetic Counseling took some time to become established. It was not until 1969 that Genetic Counseling was established in the USA, at the Sarah Lawrence College.
The 70’s and 80’s
In 1970’s and 1980’s further genetic counseling programs emerged. First in the USA and later in other countries such as the UK, Canada, Australia and South Africa. At this time genetics was mostly involved in reproductive medicine. Genetic counseling training was designed to promote patient choice. An early principle of genetic counseling was “non-directiveness”. This meant that genetic counselors tried to avoid telling patients what they should do.
Introduction of Carl Rogers
Genetic counselors also used the work of Carl Rogers, a “Psychotherapist”. His work emphasized empathy and something called “Unconditional positive regard”. This is the idea that you accept and support people, even if they say things you might find unacceptable. His work also gives importance on congruence (unity/consistency) or being genuine. He emphasized that therapists use these skills to remain non-judgmental towards people seeking therapy. The three key aspects of his work were Empathy, Unconditional Positive Regard and Congruence (being genuine). Developing these skills remain of importance even today in genetic counseling training.
Early Genetic counselors were also influenced by Kessler’s work, a pioneer of the profession. Often Genetic counselors have written and expressed views on conceptualizing genetic counseling as a highly circumscribed form of psychotherapy in which effective communication of genetic information is a central therapeutic goal. While such an approach is by no means new—in 1979 Seymour Kessler explicitly described genetic counseling as a “kind of psychotherapeutic encounter,” an “interaction with a psychotherapeutic potential”. He also highlighted how the traditional approach of a doctor/patient should be minimized and how this enables people to be empowered and to make choices that they feel right for them.
The 90’s, the development and the beginning of the Genomic Era
Haven’t we heard this term from every shadowing experience, every GC we have spoken with, or on every seminar/webinar that we would have attended. Yet, this is the much debated key concept of genetic counseling profession. If you look at the simple meaning of this term it stands for autonomy, reproductive rights, informed consent and independent decision making. There are ongoing debates on how appropriate this terminology fits in for genetic counseling practice in the 21st generation. As such this era comes with opening doors to new diseases, genetic disorders and complexities. But it also is the era of more acceptance, more independence and individual choices. This is why a few genetic counselors argue that in particular scenarios such as cancer screening based on evidence which can save lives, recommendations/opinion need to be more firm. A few believe in non-directiveness as an important tool of practice.
This was also the era of new developments in molecular genetic techniques for studying genes which meant expansion of genetic counseling in new areas. Wherever genetic testing was possible meant that it needed genetic counselors. Previously cancer testing was only family history based, then it shifts towards discovery of BRCA1 and BRCA2 which lead to increased risk of breast and ovarian cancer and it was then actually possible to tests cancer susceptible genes. This concept of genetic counseling for cancer predisposition syndromes is now a significant part of workload for many genetic counselors. This 90’s expansion and learning to acquire new skills and competencies continued to 21st generation – The current era.
This refers to being able to provide genetic testing for multiple genes in a single test which gives the power of diagnosing rare diseases to treat and prevent cancer and develop treatment for common diseases such as cardiovascular. However, knowing more comes with its disadvantage and current biggest challenge of dealing with Unexpected outcome, delivering surprising/difficult news and uncertain outcome.
Here’s where my next post will come in picture where I will be discussing on a patient podcast of unexpected outcome and its impact on life. What are the pros and cons? What was the patients expectations/feelings before the counseling and after counseling. Did it make major impact on decisions or lifestyle of life. What will be the next steps they plan to take or what are their future plans with now knowing the outcome.
Hope you all find this read useful and insightful. As always please pass on any feedback/comments and your views on the era of genetic counseling and where it’s progressing.