The twentieth century saw the emergence of novel genetic practices that defined individuals in relation to their genetic constitution (Rose, Reference Rose2007: 113). Among those practices, genetic counselling is a significant one, and the rapid development and application of genetic testing technologies makes the provision of genetic counselling increasingly important. The American Society of Human Genetics defines genetic counselling as ‘a communication process that deals with the human problems associated with the occurrence or risk of a genetic disorder in a family’ (Ad Hoc Committee on Genetic Counselling, 1975). Harper defines genetic counselling as:
… the process by which patients or relatives at risk of a disorder that may be hereditary are advised of the consequences of the disorder, the probability of developing and transmitting it and of the ways in which this may be prevented or ameliorated. (2004: 3–4)
According to these definitions, the process of genetic counselling involves an attempt to help the individual or family to comprehend the medical facts, including the diagnosis, the probable course of the disorder and the available management strategies; to appreciate the way heredity contributes to the disorder and the risk of recurrence in specified relatives; to understand the alternatives for dealing with the risk of recurrence and to choose a course of action which seems to them appropriate in view of their risk and their family goals, and to act in accordance with that decision; and to make the best possible adjustment to the disorder in an affected family member and/or to the risk of recurrence of that disorder (Tibben and Duivebvoorden, Reference Tibben and Duivebvoorden1994).
These concepts have been generally recognized and accepted by genetic counsellors. However, the application and governance of genetic counselling in a particular society depends on many social factors. The traditional model of technology governance leans heavily on the principle of scientific authority; this is being replaced, however, by the view that non-scientists can make decisions relevant to sophisticated technological applications based on their own life expertise, experience and social existence (Jones and Salter, Reference Jones and Salter2003). In fact, technological developments must be seen as an integral part of the creation of stable socio-technical networks, and the practice of emerging technology is socially shaped to reflect the activities and interests of the groups involved in the formative process. Central to the formation of such networks is the creation of particular expectations as to how the technology might be used in practice (Martin, Reference Martin2001). Within a particular society and its social contexts, both the governance of genetic counselling and its practical applications have their own characteristics.
Aiming to better understand genetic counselling in different contexts, a field study was carried out mainly in China, partly in Hong Kong and the United Kingdom (UK) from September 2008 to February 2009. During field research, the author interviewed genetic counsellors, clinical geneticists, nurses, coordinators of patient groups, the chairs and members of professional institutions, patients and their families. Clinical observation was also undertaken. This article is based on the findings of that fieldwork. It outlines the current state of the practice of genetic counselling in China, including the requirements and qualifications for genetic counselling providers, the type of clinical genetic services offered, and their governance and supervision. Additionally, the article offers an insight into the comprehension of and practice around some ethical issues in genetic counselling such as non-directiveness, informed choice and decision-making. Such issues arise from the administrative, political and socio-economic environment in current Chinese social contexts.
The current practice of genetic counselling in China
In China, there are no professional genetic counsellors and, in practice, genetic counselling services are offered by clinicians. The government has been trying to regulate the clinical application of genetic counselling. The Chinese Ministry of Health (MOH) promulgated Guidelines for Genetic Counselling in 2003 (Appendix in MOH, Reference Jones and Salter2003). The guidelines are official government rules that regulate the application of genetic counselling, particularly as related to prenatal diagnosis. According to the guidelines, genetic counselling should be offered by clinicians who have a background in genetics, have a certificate of qualification in maternal and infant healthcare, and whose work concerns prenatal diagnosis. The guidelines also state the common procedures and requirements for genetic counselling. For example, they state that in the genetic counselling session, the clinician who works as genetic counsellor should: collect information, draw a family pedigree, provide information on the procedures for prenatal genetic diagnosis, diagnose genetic disorders and confirm the way they are inherited, estimate the risk of recurrence and offer advice to patients. In practice, these form the content of the genetic counselling clinic session and are all done by the clinical geneticist.
This basic situation of genetic counselling in China is different from that in the UK, where there are professional genetic counsellors, and from that in Hong Kong, where they do not have professional genetic counsellors. In the UK, the clinical genetic counselling teams consist of medical geneticists and genetic counsellors. In practice, genetic counsellors and clinical geneticists work in close partnership, and parts of the counselling services they offer are joint or combined. Generally, genetic diagnosis and the determination of hereditary characteristics are done by a clinical geneticist; the clinical procedure of genetic testing, the explanation of the implications of the diagnosis, and the help and support for the patient for decision-making, is done by a genetic counsellor. Prenatal diagnostic counselling and pre-test and post-test counselling for a predictive/carrier genetic testing, the estimation of risk of recurrence, and the explanation of genetic testing results could be done either by the genetic counsellor or the clinical geneticist. In Hong Kong, genetic counselling services may be provided by a clinical geneticist, a nurse or a nurse midwife, but mostly they are provided by a clinical geneticist. In practice, in cases where couples are referred because of advanced maternal age (over 35), the counselling is usually offered by a nurse or nurse midwife.
Currently in China, only hospitals or healthcare providers with authorization from the Provincial Health Department to practise prenatal genetic diagnosis can develop a clinical genetic counselling service. Usually, the genetic counselling service is combined with genetic testing and the main task of the clinic is to offer diagnostic testing. As prenatal genetic testing and diagnosis require advanced technology and equipment, few hospitals have permission to offer this service. At present, mainly the big and well-known hospitals have such permission; for example, in Beijing only five hospitals have permission to offer prenatal genetic diagnosis: Xiehe Hospital, Beida Hospital, Beiyi No.1 Hospital, Beiyi No.3 Hospital and Beijing Maternity Hospital (Liu, Reference Liu2007). Usually, these hospitals locate the genetic counselling clinic in the paediatric department and/or in the gynaecology department, and they have regular sessions once or twice a week. In practice, the clinics have similar working procedures.Footnote 1 In China, there is currently no national medical health coverage system (guojia gongfei yiliao tixi). The costs for medical care are paid by patients.Footnote 2 There is no organized referral system among the hospitals, and every hospital charges the medical care fee itself. The hospitals establish a new patient record at the first clinic visit, and only take responsibility for what they do for patients in their own hospital. It is same for the genetic counselling clinics. The patient can choose in which city and which hospital to visit clinics, depending on their own choice and the financial capability to afford the costs, including the potential incidental expenses such as the costs for transportation and accommodation. However, in practice, the choices with regard to genetic counselling clinics are constrained by the limited availability of genetic counselling clinics across the whole of the country. This situation is different from countries where there are coordinated referral systems and a national medical health coverage system.
In the UK, within the National Health Service (NHS), all the medical services for patients are free. For genetic services, patients do not visit genetic counselling clinics directly but must be referred by medical professionals in a certain hospital or local healthcare provider. The referral document for a patient is sent to the local Regional Genetics Service when the doctor/family doctor considers the patient needs to attend a genetic counselling clinic. Genetic counselling is provided by professional teams in regional genetic centres/services within the medical care system of the NHS. Hong Kong has a similar referral system and medical health coverage system, and the genetics services in Hong Kong are also similar to those in the UK.
Qualifications for providers of genetic counselling
The education of counselling providers plays an important role in genetic counselling. An understanding of the significance of genetic counselling, the required standards of genetic counselling, and the necessary professional skills and codes, can only be properly appreciated through relevant education and training. Suitable qualifications and access to education/training for counselling providers are the prerequisites for the practice of counselling.
In China, the Guidelines for Genetic Counselling (Appendix in MOH, Reference Jones and Salter2003) regulate the requirements for counsellors. First, a counsellor must be a clinician with a licence. In addition, they must also have either: (1) a Bachelor’s degree in medicine, at least five years’ clinical experience working in an obstetric department as an obstetrician or other interrelated clinical departments, and have specific training in clinical genetics; or (2) at least ten years’ work experience in prenatal diagnosis, with special knowledge of clinical genetics and technology skills. They are also required to be well-educated in genetics, have ample genetics knowledge and the ability to accurately diagnose, to accurately analyse test results, and to estimate the inherited risk and recurrence risk. At present, there is no official degree programme in genetic counselling in China. In practice, genetic counselling providers are clinicians trained as paediatricians or obstetricians. Training programmes for prenatal diagnosis are sometimes available, for example at the national prenatal diagnosis training programme, which has been hosted six times by Hunan Xiangya Hospital prenatal diagnosis centre. Usually these training sessions have a lecture on genetic counselling given by a senior geneticist (Xiangya Hospital, 2008).
In some countries, professional education and/or training is required in order to practise as a genetic counsellor. In the UK, clinical genetic counsellors are required to have either a background in nursing with appropriate training, or to have completed a Master’s degree in genetic counselling. Two Master’s programmes in genetic counselling were developed in Manchester in 1992 and in Cardiff in 2000 in the UK, which are designed to educate students for clinical genetic counselling. In the UK, there are two routes to enter into the genetic counsellor profession: a minimum of six years’ training and work experience prior to entry to the profession, for the professional route, or five years for the MSc in genetic counselling route. Registration as a professional genetic counsellor can only be undertaken after a training period of two years following entry into the profession by either of the routes. The requirement is the submission of a Master’s-level portfolio of evidence of professional competencies. By registration, therefore, all prospective genetic counsellors will have completed seven to eight years of training, with many having had considerably more.
Compare this with the situation in Hong Kong where, like China, they do not have professional genetic counsellors. Currently in Hong Kong, there is no specific teaching of genetics in medical education, and no professional qualification for geneticists. Usually, clinical geneticists have a paediatric education background and a paediatrician’s licence, and they learn genetic knowledge from their clinical practice and teach themselves. There is no programme for genetic counsellors and no professional institution governing genetic counsellors. Nonetheless, some professional training is required. The head of the Clinical Genetic Services Centre explained that one of the requirements for a genetic counsellor is three years’ training in the Centre, including six months’ overseas study of professional genetic counselling, usually in the UK or in Canada. One of my interviewees, a clinical geneticist, emphasized that studying professional genetic counselling overseas was very important for them to learn to pay more attention to non-directive principles in counselling, to consider the psychological issues the patients exhibited, and to be aware of the communication skills.
Main issues concerning genetic counselling
As described above, the basic situation of clinical counselling and counsellors, the requirements and qualifications of counsellors, and the education/training of counsellors in China has its own specificity. This section of the article will focus on the understanding of the issues concerning genetic counselling in Chinese social contexts, using some comparisons to illuminate the distinctiveness of the Chinese situation.
Goals of practical genetic counselling
At the start of this article, I described how the aim of contemporary genetic counselling is considered to be informative: to convey relevant genetic facts and reproductive options in order to enable families to plan reproductive decisions and to adjust realistically to, or cope better with, their genetic problems (Hsia, Reference Hsia, Lubs and Cruz1977: 53–82). However the goals of genetic counselling have varied over the past three decades. American researchers from the US National Human Genome Research Institute pointed out that there are two prominent viewpoints of the goal of genetic counselling. One view upholds the goal of preventing birth defects and genetic disorders; the other view promotes the goal of improved psychological well-being in patient adaptation to a genetic condition or risk. Both views emphasize that patients should make their own reproductive decisions; however, the former relies on patients making decisions that will reduce the impact of genetic disorders (Biesecker, Reference Biesecker2001). These different goals of genetic counselling shape its practice, and counselling practices embody those goals. In addition, the accepted professional code of ethics, government guidelines and the genetic counselling providers’ awareness of their role and duty also express or reflect the goal of genetic counselling.
In China, according to regulations enacted by the MOH, genetic counselling is treated as one part of prenatal diagnosis technology (MOH, Reference Jones and Salter2003: Article 2). The MOH states that the main purposes of enacting a guideline of prenatal diagnosis technology are ‘in order to safeguard the mother and infant health, improve the quality (su zhi) of the newborn population, to ensure the safety of the prenatal diagnosis technology’ (MOH, Reference Jones and Salter2003: Article 1). The Guidelines for Genetic Counselling is an appendix to the Guidelines for Prenatal Diagnosis Technology promulgated by the MOH in 2003. According to the Guidelines for Genetic Counselling, such counselling is provided for patients inquiring about a genetic disorder, birth defect or reproductive decision-making (MOH, Reference Jones and Salter2003: Foreword). Some well-known genetic experts working as clinical geneticists hold the opinion that genetic counselling is a type of medical guidance (yixue zhidao), and consequently that genetic counselling will reduce birth defects, thereby improving family welfare and social harmony (cujin jiating xingfu he shehui anding) and enhancing the population quality of the nation (tigao minzu sushi) (Xia and Wu, Reference Xia and Wu2003).
Currently in China clinical genetic counselling is combined with genetic testing. The main reason patients resort to the genetic counselling clinic is to undertake a genetic test. For pregnant women who know they are at high risk, the purpose of counselling is to avoid giving birth to an affected baby. One of my interviewees, a pregnant woman who has a son with Duchenne muscular dystrophy (DMD), expressed her view:
I heard from the doctor in local hospital in my hometown that this hospital has a genetic counselling clinic and can offer prenatal genetic testing. Then I come here to take the test. I hope I will have an unaffected child. Otherwise, why would I want to spend so much money coming here and to pay for the test?Footnote 3
Another interviewee has a 9-year-old son with DMD and a daughter who is 21 and has reached the legal age to marry. She described how the doctor in the clinical genetic counselling session told her that the test result of the boy, confirming DMD, would enable her daughter to be aware of the high risk. The doctor explained to her that when her daughter got pregnant she should attend a genetic counselling clinic to take a test, to avoid giving birth to a child affected by DMD. The doctor emphasized this would be an important and significant action to prevent a ‘tragedy’ happening again (beiju chongyan) to her daughter, and she (the mother) also agreed.
In the UK, the Association of Genetic Nurses and Counsellors (AGNC), founded in 1980, is the professional organization which represents genetic counsellors and genetic nurses in the United Kingdom. The AGNC approves the definition of genetic counselling defined by the American Society of Human Genetics in 1975. As the professional organization for genetic counsellors, the AGNC represents the view of the profession and prescribes standards of clinical practice in genetic counselling. The AGNC also seeks to clarify and guide the conduct of genetic counsellors. It states that all genetic counsellors must be aware of the ethical implications of their professional role, and adhere to the principles and guidelines in the code developed by the AGNC (AGNC, 2008a). The AGNC also states that the aims of genetic counselling are to help the individual or family understand information about a genetic condition, appreciate the inheritance pattern and risk of recurrence, understand the options available, make decisions appropriate to their personal and family situation, and make the best possible adjustment to the disorder or risk (AGNC, 2008b).
A counsellor interviewed in the UK also expressed this view:
We understand that the patients are under pressure. They are full of worries when they encounter genetic problems. It is not very difficult for the patient to understand the genetic information and available options when we explain them in a proper way, but it is difficult for them to make a decision. We help our patients to reduce their psychological distress, reduce self-blame and relieve their worries. That is what we are here for.
Thus genetic counselling in the UK not only offers information about the genetic problems but also considers the psychological issues that clients face in such conditions.
In Hong Kong, activities conducted in the Clinical Genetic Service (CGS) Centre and in the hospitals take place according to generally available professional standards. The kind of service provided by CGS is mainly for prevention of genetic diseases. At the genetic counselling clinic, patients receive ample information about the genetic disorder. In practice, for those genetic disorders that seldom recur in the family, genetic counselling can relieve the patients of unnecessary anxiety regarding future reproduction. For those conditions that are associated with risk of recurrence in the family, genetic counselling is considered of utmost importance to prevention (Department of Health, 2006). One clinical geneticist interviewed in Hong Kong explained that genetic counselling is important to prevent genetic disease, but that the goal of genetic counselling is not to reduce the occurrence of genetic disorders; the genetic counselling service is also very important in helping patients to make their own reproductive decisions.
Non-directiveness and decision-making in practical genetic counselling
Genetic counselling is one practice in which individuals are encouraged to reflect upon their inherited constitution, with the explicit aim of affecting their conduct (Rose, Reference Rose2007: 113). Thus, the directive or non-directive procedures through which counselling attempts to affect the individuals’ conduct, especially for reproductive decisions, are significant. Non-directiveness, also known as client-centred therapy, which was established by Carl Rogers in 1940s and 1950s (Rogers, Reference Rogers1951: 29 ), means that the counsellor leaves all decisions about future reproduction up to the family and does not provide any recommendation for treatment or intervention. Non-directiveness is one of the guiding principles of genetic counselling in Europe and the United States. For the individual genetic counsellor, this conception has provided practical and ethical guidance in the complex tasks of presenting technical information, giving emotional support and assisting in the process of decision-making. At the professional level, it has served as a basis for developing ethical standards, counselling techniques and professional identity (Weil, Reference Weil2003). Non-directiveness is based on the desire to uphold the personal nature of reproductive decision-making and a reluctance to pass judgement on the worthiness of the life of a person affected with a genetic condition (Murray, Reference Murray1996). This concept has been influential in the way of working with counselling patients. In practice, the understanding of non-directiveness and of how to achieve non-directiveness is very important.
In China however, offering advice is one of the duties of a clinician working as a genetic counsellor. According to the Guidelines for Genetic Counselling (Appendix in MOH, Reference Jones and Salter2003), clinicians working as genetic counsellors should offer advice on marriage, reproduction, or some general consultation. However the guidance is that clinicians should try their best to avoid expressing their own opinion during counselling. A medical expert I interviewed pointed out that currently few clinicians pay much attention to psychological aspects when they offer genetic counselling. In fact, for most patients, the feasible options are limited because of their economic situation, the healthcare system and the family planning policy. One genetic counsellor’s words demonstrate this:
In most conditions, I need not say more and the patients know clearly what they can choose. They resort to the genetic counselling clinic with the clear wish to have a healthy, unaffected baby. I think I need not or cannot say keeping an affected fetus is an option. The patients already thought this is not option for them. Imagine, when I say she also has the option to keep the affected fetus, that the patients asked me where they can get money to treat their baby? I would be dumbfounded (sha yan) and could not say anything.
One clinical geneticist also expressed a personal opinion regarding non-directiveness:
I think nowadays we are trying to be non-directive in counselling. We require the patients to sign an informed consent form before they take a genetic test, which is a necessary procedure now. We cannot promise that the test results are always 100 per cent accurate. We need to make sure that the patients voluntarily take the test and voluntarily take the risk. This is also a way to avoid potential conflict. We do not write ‘clinician suggestion’ on the test report and we do not advise patients to terminate or keep a pregnancy. We explain the test result to patients. Usually the patients have already thought over their choices, which depend on the test result. In fact, when the patients understand the test result, they know what they will do.
One genetic counsellor shared her experience and her opinion about non-directiveness and informed decision-making:
Usually, if the pregnant woman already knows the fetus is affected, they will terminate the pregnancy. For this, they hardly need any advice. They regard the test as a way to avoid having an affected baby and understand well it is so hard to have an affected child. Actually, I have only come across one case that a pregnant mother still kept her pregnancy when she knew the test result was ‘bad’, which was years ago. She already had one affected child and I explained to her that her fetus would have the same condition as the affected one. She did not believe it, because she resorted to the fortune teller, and the fortune teller told her this fetus was perfect and would bring amazing good luck to her family. I think I had told her what I should have. After the fetus was born with a disorder, she came to the clinic again for diagnosis with great regret. But it was too late for regret (houhui moji). Judging on the basis of this case, I think sometimes we still need to ‘direct’ the patient.
In the UK, non-directiveness is treated seriously in all counselling concerned with reproductive decision-making. In my fieldwork, all the genetic counsellors I interviewed in the UK insisted strongly that the genetic counselling should be non-directive, and they considered their clinical practice of genetic counselling to be non-directive. Such opinions are shown by the following quotations from my interviews:
During the counselling session, we tell the clients their genetic condition. As for the decision-making, especially for the reproductive decision-making, we do not tell the patient what they should do. We offer options to patients but no suggestions. We help and support any decision the patient makes without our judgement. Certainly, I have my own opinion. But I try to avoid my opinion influencing my patients’ decision-making. We do not lead or hint to our patients to make their decision. Actually, I think it is patients who ‘lead’ us. During our counselling, from what the patients told us, we can feel their worries then help their relief. Sometimes we can feel they have already made their decision but they are hesitant because they need support psychologically, then we support them.
I think we are always trying to help our patients reach the ‘good’ decision from their personal view. We let the patients understand there is no right or wrong, only a suitable decision. The important thing is they understand well their choice and what will happen if they take this choice. We do not guide them to any decision, as to test or not to test, to terminate a pregnancy or to keep it. We never say ‘maybe it is better to …’
If patient asks me what I would do if I were him, I will tell him everyone is different. We are different and something I think is good for me may not be good for you. I do not regard non-directive counselling as irresponsible. I will do my best to help a patient to make their personal decision, but not lead or direct.
In Hong Kong, the view of clinical geneticists is that they are trying to help their patients arrive at the best decisions from personal perspectives and are not guiding them towards any particular decision. The CGS states that during practical genetic counselling, the non-directive approach should be adopted such that patients are provided with information about the disorder to make their own informed decision, particularly regarding reproductive options and prenatal diagnosis (Department of Health, 2006). The genetic clinicians hold a similar opinion and insist they are practising non-directive counselling (Tang et al., 1991). A genetic clinician I interviewed explained that genetic counsellors are trying to avoid directiveness during counselling:
Maybe it is easier for patients to get a clear suggestion when they are worried and feel it is difficult to make a decision. Sometimes patients would like us to give them clear advice, and directly tell them what to do, but we cannot do it in that way. We listen to their worries and try to reduce such worries. For example, if a patient hopes to keep a pregnancy with an affected fetus and at the same time worries about the reaction, like discrimination and blame from society, we will tell them they need not worry about society and society is expected to help them. And we tell them where and what help they can get from society. We tell them the options they can choose and what they can do if they choose one option. We let them know options are options, not good or bad. We understand maybe either of the options will make them feel regretful in the future, like keeping or terminating a pregnancy with an affected fetus. We also let patients know this and help them to choose one which they feel possibly will bring less regret for them.
The ethical principles of non-directiveness and informed decision-making in genetic counselling are well known in each of the three countries that I am discussing. The counselling providers in the three societies in question all regard their counselling as non-directive, or believe they are doing their best to keep it non-directive, but their understanding of non-directiveness and the extent to which it is applied are different. Comparing these three societies, non-directiveness is more deeply embedded in practice in the UK than in Hong Kong, and more deeply embedded in both the latter systems than in China. One Chinese geneticist I interviewed regarded current ‘non-directiveness’ in China as a ‘skin deep’ (biaomian shang de) non-directiveness.
Discussion
On the basis of the different situations of genetic counselling in three societies, this section will examine factors that have contributed to the form taken by genetic counselling in China.
Non-professional counselling in China
Usually, in medical treatment for the patient’s welfare, a doctor’s job is to some extent directive. In China, clinicians working as genetic counsellors were educated as clinicians but not as professional genetic counsellors. Currently, there is no institution to license counsellors and specifically to govern the group of counsellors. A geneticist I interviewed said the counsellors have no ‘niang jia’ (‘niang jia’ literally translates as mother’s home of a married woman, which metaphorically means a union for a special group). Also, he expressed his own view on the role of the clinician geneticist working as a genetic counsellor:
I think there is no problem that the doctors can offer genetic information to patients, but to some extent this situation is wasting the ‘resource of the doctor’ (yisheng ziyuan), where supply already falls short of demand. In practice, with many patients waiting outside the door, doctors do not have enough time and energy to think more about psychological issues. Maybe they are also not aware of such issues. Without special and suitable training, I do not think a genetic clinician, even an expert, can make a good genetic counsellor. In practice, because ‘genetic counsellor’ is not a formal official profession, there is no professional title of ‘genetic counsellor’. You know, professional title is so important in a person’s professional career. I think that ‘Genetic Counselling’ has not been paid much attention by the authorities. This is also a reason that many young genetic clinicians do not have enough passion or impetus to learn genetic counselling themselves and would not like working as a genetic counsellor.
In fact, the qualifications for the genetic clinician who offers genetic counselling in China emphasize medical knowledge and technology. The essential professional responsibility of clinicians is to heal the wounded and rescue the dying (jiu si fu shang). In practice, doctors try to reduce illness and minimize human suffering from illness. For example, in the case of prenatal diagnosis, the clinical obstetrician’s initial motive in performing prenatal genetic testing may be to detect and then reduce abnormalities. As for genetic counselling, this is seen more as psychological support for patients’ decision-making, and even this runs counter to the clinician’s initial motive. As a communication process with the patients, counselling providers need to make use of more communication skills than common clinicians, such as promoting shared language and using silence and listening skills (Baker et al., Reference Baker, Schuette and Uhlmann1998: 65–70), to help clients to overcome their emotional problems, and counsellors should avoid using scientific terminology and jargon in their explanations. Practising these communication skills requires proper education/training, which is at present lacking in China.
A model of genetic counselling
Since the concept ‘genetic counselling’ was coined in 1955 (Reed, Reference Reed1955), there have been four models proposed: the eugenic model, the medical preventive model, the decision-making model, and the psychotherapeutic model (Baker et al., Reference Baker, Schuette and Uhlmann1998: 2–4). The eugenic model aims at counselling families with a history of ‘defective’ offspring not to reproduce. The medical preventive model and decision-making model emerged from the 1950s to the early 1970s. It attempts to give families information and offer the option to avoid recurrence of a particular genetic disorder. Its aim is the optimization of population health, mostly through the prevention of birth defects (Fine, Reference Fine, Bartels, Leroy and Caplan1993). The decision-making model allowed a more interactive type of counselling so that individuals were not only educated about the risks but also were helped with decision-making on further testing and reproductive concerns. And the counselling provider believed that those who were at risk of having defective children, once given accurate knowledge, would make ‘responsible’ use of that knowledge and make their own prudent decisions concerning reproduction (Rose, Reference Rose2007: 115). In the psychotherapeutic model, which became dominant during the 1970s, the genetic counsellor not only provides the individual with the necessary information but also helps them through any psychological and emotional difficulties. And, increasingly, individuals are addressed as autonomous individuals making informed and responsible choices for their own futures (Dice, Reference Dice1952; Herndon, Reference Herndon1955; Rose, Reference Rose2007: 115).
This research shows that current genetic counselling in the UK has fully adopted this model, while in Hong Kong there is a tendency towards the psychotherapeutic model. In China, current genetic counselling is more like the medical preventive model or the decision-making model. In the latter, clinical counselling offers mainly genetic diagnosis, the determination of hereditary characteristics, the estimation of risk of recurrence, the explanation of genetic testing results, availability of treatment, content of treatment and feasible measures to prevent the condition. This model emphasizes the genetic disorder itself and the associated medical problems. The psychological and emotional aspects are left to the patients and to some extent are ignored. In fact, currently, the patients who resort to genetic counselling do not expect psychological therapy or consolation, although they hope the clinician will understand they are experiencing distress. One of my interviewees, who has a son affected with DMD, explained her view, which is shared by many patients I interviewed in China:
I do not come here for psychological therapy. The doctor here is not psychologist. Certainly, I hope the doctor is kind, patient, warm-hearted and understanding. For the psychological and emotional pain, I think I try to, and have, overcome it. If needed, possibly I will turn to my family or friend.
All clinical geneticists and counsellors interviewed in this research prefer the psychotherapeutic model and agree that this model takes better account of the patient’s psychological difficulties and that it is better for the patient’s well-being. The counsellors interviewed in the UK consider the current model in the UK to be very good. The Chinese geneticists interviewed think it is much more difficult for clinical geneticists to carry out such a model in the current Chinese context and consider that the current genetic counselling in China is realistic.
Limited choice and decision-making
In China, illness has a close correlation with poverty, especially in rural areas. The cost of medical services has not only been shown to be a major factor influencing hospital utilization by the poor, but also medical costs contribute to families falling into poverty (Kaufman and Fang, Reference Kaufman and Fang2002). Nowadays, Chinese parents have greater expectations for their offspring under the one-child population policy, and prospective parents wish, at the very least, for a healthy baby. For the majority of Chinese families, the ensuing financial burden of medical treatment for a child born with a serious genetic disorder, for example thalassaemia, is so oppressive that it is hard to afford. Additionally, the deficient public welfare system, the shortage of social support or help for the disabled, and the potential social stigma and discrimination make prospective parents worry more. These limit the feasible options concerning reproductive decision-making. Genetic counselling, which is combined with genetic testing, plays a major role in preventing birth defects. In practice, for patients and families who resort to the genetic counselling clinic, the main purpose is to take a genetic test in order to avoid having an affected child. For them, the financial stress outweighs any psychological pressure, which also might be caused or sharpened by financial stress. Compared with China, the UK and Hong Kong are wealthier countries with public healthcare systems and comparatively better public welfare. For the parents in the United Kingdom, to a certain extent, the cost of abortion in terms of remorse and guilt may outweigh the financial burden of rearing a handicapped child (Clarke, Reference Clarke1991). Additionally, the inference of cultural or religious views of the moral position of the embryo and the status of fetus also plays a role in reproductive decision-making.
Non-directiveness and non-judgement
The counsellors I interviewed in this study all insist that genetically at-risk individuals must govern themselves and their lives, and the counsellors regard what they are doing in practice as non-directive. However non-directive counselling is difficult to attain. For non-directiveness, it is essential that the counsellor or clinician be non-judgemental. In practice, the counsellor’s motives, conscious or unconscious, are relevant during counselling, and it is the counsellors who decide what kind of information should be given to the patients, which involves a value judgement. In practice, it is not easy for counsellors to avoid conveying their personal value judgements. It has been suggested that ‘non-directive’ counselling is an abdication of professional responsibility and that it is impossible to maintain a sincerely non-directive approach to counselling about a genetic disorder while simultaneously aiming to prevent that disorder (Clarke, Reference Clarke1991). The counsellors I interviewed consider that there is still scope for improvement in approaching the ideal of non-directiveness, even though some of them regard their current counselling mode as very good or nearly perfect in that respect. However, most of them do not agree that non-directiveness is irresponsible. At the same time, they do not deny that sometimes, to a certain extent, directive counselling is supportive and helpful for the patient. In China, one of the main aims of current genetic counselling is prevention of genetic disorders, and the guidelines and regulations require clinicians to offer advice to patients. Also, as we have seen in the quotations from my Chinese interviewees, current genetic counselling in China can be said to differ from non-directive counselling, even though the clinical geneticists consider it to be non-directive.
Nowadays, with the development of medical ethics in China, the recognized principle of non-directiveness is becoming well known. It is understandable that counsellors wish their work to be in accordance with ethical principles. Also, in practice, claims that counselling is non-directive, and that no directive advice is offered to aid patients’ decision-making, perhaps help the counsellors to avoid potential disputes or litigation. Frankly, in practice, ideal non-directiveness and non-judgement in genetic counselling is hard to achieve. Although non-directiveness connects with freedom and autonomy of decision-making, in fact, both understanding and psychological support for patients are needed. Sometimes, in certain conditions, even for a very personal decision such as reproductive decision-making, directive and feasible advice from experienced clinicians/counsellors can also be very helpful.
Conclusion
This research has shown the similarities and differences in the practice of genetic counselling in China compared to the UK and Hong Kong. In China, genetic counselling services are offered by clinical geneticists, and the clinical genetic counselling related to prenatal diagnosis is under the governance of official guidelines with the goal of reducing birth defects. In the UK, there are professional counselling services following the psychotherapeutic model and non-directive style. In Hong Kong, the practice of genetic counselling is offered by non-professional counsellors with some professional training and a non-directive style is prevalent. In fact, the social context makes genetic counselling distinctive in individual societies. Hong Kong and mainland China share the same traditional Chinese culture, and Hong Kong and the UK have similar medical service systems and economic conditions. This research shows that, comparatively, the version of genetic counselling developed in Hong Kong has taken a middle course and is somewhat closer to that of the UK.
Generally, I have argued that economic conditions, the non-professional status of the genetic counselling provider, the lack of full coverage of the healthcare system and the national population policy are the formative factors of the current version of Chinese genetic counselling. Compared with practices in the UK and Hong Kong, where individual well-being and autonomous reproductive choice are more respected, patients in China have fewer feasible options concerning their reproductive decisions. Such situations contribute to the practice of genetic counselling and its governance in China, and, to some extent, limit proper communication and applicability of non-directiveness in genetic counselling in China.
