Genetic counsellors generally form a health team and provide information to the patients about the risk of genetic condition at which that particular family or individual is dependent upon. They provide information about genetic testing to the patients and disclose the procedure by which the testing was carried. The paper contains the ways in which the genetic counselling centres function and also it states the method of regulation of these centres.
Genetic counselling is all about generic counsellors furnishing information on the chances and consequences of inheriting family illness. Inheritance of family illness is a risk that is an outcome of a peculiar genetic condition. These conditions are to be analysed, characterized, and circularized to predict the wealth of health in a particular family. The entire process of genetic counselling is crucial for implementing genomic medicine. The unfamiliarity of this arena demands regulation, and, in our country, it is regulated by virtue of the Pre-Conception and Pre-Natal Diagnostic Techniques Act, 1994.
Role of Genetic Counselling Centres
The Pre-Natal Diagnostic Techniques Act, 1994 monitors the use of pre-natal diagnostic techniques to confine its operation by limiting its detection to genetic abnormalities, metabolic disorders, chromosomal abnormalities, certain congenital malformation, haemoglobinopathies, sex linked disorders, and other similar disorders.
Chapter II of the Act, 1994 deals with the regulation of Genetic Counselling Centres, Genetic Laboratories and Genetic Clinics. It postulates the regulatory framework in three capsules:
All Genetic Counselling Centres, Genetic Laboratories or Genetic Clinic must be registered under the Act, 1994 and only those registered centres, laboratories, clinics shall undertake functions related to prenatal diagnostic techniques.l
All Genetic Counselling Centres, Genetic Laboratories or Genetic Clinics must employ or take services only from the professionals.l
All medical geneticists, gynaecologists, paediatricians, registered medical practitioners or any other persons associated with medical field can undertake any function corresponding to the prenatal diagnostic technique only at a registered place under the Act, 1994.
The Genetics Unit, Department of Paediatrics, AIIMS, New Delhi (WHO Collaborating Centre) is a Government set-up unit which provides for genetic diagnosis, prenatal diagnosis, and counselling. Further, the Indian Council of Medical Research in Mumbai substantially deals with and provides information on Haematological disorders and where they provide prenatal diagnostic services. Adding on, policies are also issued in this regard and on that aspect, the National Bioethics Committee within the perimeters of the Department of Biotechnology in the Ministry of Science & Technology issued Ethical Policies on the Human Genome, Genetic Research, and Services 2002. This was a brilliant initiation that provided guidelines for the functioning of counselling centres.
The identification of inheritance pattern aids a family for generations to generations. In general, this identification comprises of four essential processes, namely, diagnostics, risk calculation and estimation, management and preventive measures, support both physical and psychological. Genetic Counselling offers prime support for knowing the following:
If there is any hereditary disease running in the family, if not, are there any possibilities for the same? Or,
If parents with frequent abortions or having genetically abnormal child will ever give birth to a healthy baby? Or,
If more than one incidence of cancer will naturally result in further incidences of cancer in the family?
The above-mentioned are frequent concerns for families approaching genetic centres. Other concerns include infertility, artificial reproduction techniques and pre-implantation genetics, neurogenetics and psychiatric genetics, common adult disorders (e.g., cardiac diseases, diabetes, asthma, etc), genetics in the primary care setting – birth defects and mental retardation and research in infectious diseases – TB, HPV, etc. Genetic counsellors are the light house for families with the above said issues whereas the policies and the legislative frameworks for governing and regulating genetic counselling act as the guiding light.
As already stated, genetic counselling is a method of knowing information of detailing study about the genetic conditions that is likely to affect either us or our family members. This genetic counselling is much prevalent in other countries and has also started to evolve in India. With the upcoming health issues and generic disorders, Genetic Counselling centres has taken a huge impact on the society as a whole. Normally, people who face problems regarding Infertility, Cancer, Cardiovascular, Prenatal, Metabolic, Foetal Interventions Genetics etc.,
The Genetic Counselling Centres consists of Genetic Counsellors who aids in identifying one’s problem. In addition to that, the Genetic counsellors are those who are licensed by states having unique specialisation skills and has experience in the areas of both medical genetics and counselling. Since it requires specialised knowledge in the field of medicine, they could very analytically identify one’s inherent problems and are able to give the patients a better solution.
It is also the essential duty of the Genetic Counsellor to explain the situation to the patients in a very understandable manner and the effects of how that could affect their family as such. It is also their responsibility to correctly diagnose the diseases and the respected genetic tests to be undergone. Not all Genetic Counsellors deal with all kinds of disorders. Most of the Genetic Counsellors themselves specialise in varied areas of medicine such as neurology, cardiology, gynaecology, infertility, oncology, paediatrics, and other areas of medical care. Depending on one’s disease, the particular type of Genetic Counsellor dealing with similar issue, the advice can be sought.
Although it is one’s autonomy of deciding whether to consult a medical Genetic Counsellor, one can also seek a doctor for his genetic problems. But the one main advantage of going to the Genetic Counsellor is that they have advanced knowledge on their field comparative to that of the practising doctors. The Counsellors as stated above, guide in interpreting the disease more accurately and also helps in supporting the family or the patient more emotionally.
Although India authorises Genetic Counselling Centres and Genetic Counsellors, there is no single law to govern them completely. Since the Genetic Counsellors are varied with different skills of expertise, there are only a limited number of laws that could actually govern them and punish them for the offence they might have committed. One such act for instance is the Pre- Conception and Pre- Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994. In the said act, the Medical Geneticists are explained as those who possesses a degree or diploma in genetic science in the field of sex selection and pre-natal diagnostic techniques or has experience of not less than two years. As per this act, Section 23 states that a medical geneticist is punishable if he contravenes with any of the provisions of the act and is punished with imprisonment as well as fine. Thereby it is evidently clear that only the Genetic Counsellors specialised in Pre- natal Genetics could be punished as per this Act. The stance of other Counsellors working in other areas and their magnitude of punishment is unknown and yet not governed by any provisions.
Thus, it is the duty of the Government and Ministry of Health Affairs to look into this and also that there is a need and essentiality of genetic counselling in India and thereby their behaviours, well- beings and the decisions are to be monitored. In addition to that, their training guidelines are also a need for the hour to further help the patients which in turn brings a level of reliability amongst the patients in depending Genetic Counselling Centres.
Genetic Counsellors not only provide the solutions based on the science but also with the psychological and social impacts of genetic test results. The testing is informed only from the perspective of the counsellor considering the mental and physical health of the patient. The main roles of these counsellors are nothing but to translate and convey the scientific data and help the patients to understand the complexities involved in the mechanisms. The genetic counselling methods were built in such a way that it was initially focussed upon the prenatal screening, diagnosis in the paediatric population and more recently genetic counselling has emerged into field of cancer. Thus, this creates a benchmark for counsellors who practice in the subject of genetics amidst the counsellors from other field of medicines such as cardiology, psychiatry, and neurology.
Is It Possible To Find A Genetic Counsellor In Rural Areas?
The best way to find a genetic counselling centre is by using the NSGCs genetic counselling tools.
Whether All Genetic Counsellors Work In The Same Field Of Law?
Genetic counsellors generally work in different services in the field of medicine. Some work in clinics and some even work in the hospitals depending upon the medical care and study involved within their work. The mode of services also vary nowadays as the one to one counselling sessions has been expanded into the online mode by teleconference, video calls etc.
Pre- Conception and Pre- Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994- Section 2(g)