Research

This Webpage contains a summary of research projects conducted by the Medical Ethics Unit and its collaborators.

(1) A survey of viewpoints regarding medical decision-making capacity of adolescents in Hong Kong
(Principal Investigator: Prof. Edwin C Hui, Co-Investigators: Dr H Y Kuan, Department of Nursing Studies, Faculty of Medicine; Ms S Y Chiu, Ms S K Shum (Queen Mary Hospital) )

This study explores the attitudes and perspectives regarding adolescent patients and their capacity for and right to medical decision-making of:

(a) healthcare personnel
(b) parents of both well and sick adolescents
(c) well and sick adolescents and young adults in age groups between 12 to 21.

The study also aims to compare the attitudes and perspectives between these three study groups.

The results of this study will enable healthcare personnel and parents to adopt more sensitive attitudes and appropriate actions when adolescents receive medical care. This may also enlighten parents to their minor children's real needs and will help to reduce any family tension that may exist at at time when family harmony is important. Most important of all, the results of this study will improve the relationship between the healthcare providers and the adolescent patients and their families and such improvement can be expected to have positive health outcome.

Status: Project completed.

Publication: "Adolescent and Parental Perceptions of Medical Decision-making in Hong Kong" , Bioethics, Vol. 22, No. 5, 2008, pp.286-295

(2) Ethical Decision-Making and the Potential Use of Advance Directives by Hong Kong Chinese Patients with Metastatic and/or Recurrent Cancer: A Prospective Study
(Principal Investigator: Prof. Edwin C Hui, Co-Investigators: Dr Daniel Chua (HKU), Dr Rico Liu (Queen Mary Hospital), Department of Clinical Oncology)

The overall goal of the study is to develop an ethical framework for the management of cancer patients in Hong Kong that takes into consideration the Chinese cultural background that informs and shapes patients' values, beliefs, preferences, goals and decisions. There is a continuum between self-determination at one end, and shared decision-making at the other. It is the objective of the study to identify the distribution of patients' preferences along this continuum and the rationale behind the decisions.

The study also explores the attitudes of cancer patients having metastatic and/or recurrent cancer on "Advance Directives" or "Durable Power of Attorney" in relation to medical treatment which are currently under examination by the Law Reform Committee after public consultation that ended in September 2004.

Status: Project Completed & report write-up in progress

(3) A survey of the ethics climate of Hong Kong public hospitals
(Professor Edwin C Hui and The Steering Group on Medical Ethics of the Hospital Authority Clinical Ethics Committee, Hospital Authority Head Office)

An ethical approach to medical and clinical practice is vital for an optimal outcome for the patients we serve and for a good working relationship among healthcare professionals.

The purpose of this survey is to gain baseline knowledge on the ethical "habits" in HA (Hospital Authority) hospitals, and to acertain your views as to where the educational needs are with regard to clinical ethics.

This is a collaborative project between the Medical Ethics Unit and the Clinical Ethics Committee of the Hospital Authority Head Office.

Status: Paper submitted.

Publication:

1. "A Survey of the ethics climate of Hong Kong public hospitals", Climate Ethics, Aug 2008, Vol.3, pp.132-140

2. "Perception of Ethical Practices in Hong Kong Public Hospital: Inter-and Intra-professional Similarities and Differences and Implications for Professional Replationship", Journal of Nursing Management, Feb 2010

Abstract: The main objective of the study was to survey health-care practitioners' (HCPs) perception of health-care practices that are of medical–ethical importance in Hong Kong public hospitals, and to identify the moral issues that concern them most. A total of 2718 doctors, nurses, allied health and administrative workers from 14 hospitals participated. HCPs considered that communication/conflict between patients/families and HCPs was the most important issue, followed by issues concerning patients' rights and values. The ‘ethics climate’ in Hong Kong public hospitals was found to be largely determined by two negative factors (inadequate communication and conflict issues) and two positive factors (high regard for patients' rights and the decline in family interference). Chinese cultural conventions were inferred to exert strong influence on the behaviours of HCPs and patients/families. Significant differences in perceptions between different categories of HCPs were also detected. The study was the first of its kind ever done in Hong Kong and signalled the need for institutional reorganization and medical–ethical education.

(4) Assessment of the demand for prenatal Down syndrome screening and diagnostic testing using willingness to pay
( Principal Investigator: Dr K Y Leung, Consultant, Dept of O & G, QMH; Co-Investigators: Professor Edwin C Hui, Director of Medical Ethics Unit, Faculty of Medicine; Dr Cora Ngai, Dr Charas Ong, Dept of O & G, HKU; Dr W C Leung, Dr Ben Chan, Dr C P Lee, Dept of O & G, Queen Mary Hospital; Dr Mary Tang, Consultant, Prenatal Diagnostic and Counselling Dept, Tsan Yuk Hospital)

In the current policy at Hospital Authority, women aged 35 or above are offered a direct invasive test (amniocentesis or chorionic villus sampling) or a screening test (integrated or serum screening) for Down syndrome without charging. Commencing 1 April 2005, the Hospital Authority will implement a new policy where women aged 35 or above are offered a screening test alone without charging. If they choose a direct invasive test, they will be charged. Women below 35 who opt for a screening test will also be charged.

The objective of the study is to investigate the demand for screening and diagnostic prenatal testing in pregnancy women of all ages by using estimates of willingness to pay for these procedures.

Status: Data entry in progress.

(5) Survey of public opinion on the ethical, legal and social implications (ELSI) of genomic sciences
( Professor Edwin C Hui and ELSI Group of HKU)

This study aims to investigate public's understanding of genomic sciences and their perception of the legal, ethical and social implication of the application of genomic technology e.g. handling of genetic information.

A telephone survey will be conducted to interview members of the public aged 18 to 64 with at least Form 5 (equivalent to "O" levels in the U.K.) education. In addition, the same questionnaire will be distributed to research and academic staff and students of HKU to investigate to see if there any different opinion exist among respondents trained in different disciplines and whether higher education have influence over their attitudes.

Status: Paper submitted

Publication: "Opinion survey of the general public and university students in Hong Kong regarding genomic science and technology and its ethical and social implications", New Genetics & Society (2009), 28: 4, pp. 381-400

(6) Survey of patient attitudes and preferences of using preimplantation genetic diagnosis (PGD) and preimplantation tissue typing (PTT) to conceive a child to save a sibling's life
( Principal Investigator: Professor Edwin C Hui; Co-Investigators: Professor Chad Hansen, Chair Professor of Chinese Philosophy, Department of Philosophy, Faculty of Arts, HKU; Dr Carina Chan, Dept of O & G, Faculty of Medicine, HKU; Dr Athena Liu, Department of Law, Faculty of Law, HKU)

This study aims to study the opinion of couples seeking in vitro fertilisation (IVF) service at an assisted reproductive clinic on the ethics of the application of PGD and tissue typing to create an hereditary disease-free and tissue compatible embryo with a view to create an infant donor of cord blood for an existing sick sibling afflicted with the hereditary disease. The opinion of these couples will be compared with couples whose babies are naturally conceived and who are seeking routine antenatal care at the outpatient prenatal clinic.

The results of this study will provide local health care professionals, particuarly in the area of clinical genetics, genetic counselling, and assisted reproductive technologies, wit the basic understanding on the current level of acceptance on the application of PGD and tissue typing to "create a life to save another life" among couples whose babies are conceived artifically or naturally.

Status: Project Completed

Publication: "Attitudes of Chinese couples in Hong Kong regarding using preimplementration genetic diagnosis (PFD) and human leucocyte antigen (HLA) typing to conceive a 'Savior Child', Prental Diagnosis, 2009: 29: pp. 593- 605

(7) International study of the perception of human embryonic stem cell research and clinical application by scientists, clinicians, and lay-persons, respectively.
( Principal Investigator: Professor Edwin C Hui. This study is a collaboration with the Rutgers University of New Jersey, U.S. and Laboratoire de Recherche sur le Laserponcture, France)

The debate on the use of embryonic stem cells mainly surrounds the moral status of the extracorporeal embryo, and thus the moral permissibility of human embryonic stem cell research. This study seeks to survey the attitude of the participants regarding human stem cell research and its related applications.

The study explores the following topics: moral status of human embryo, use of human embryos for research purposes, use of nuclear transfer techniques to create human embryos, deriving human stem cells from embryos produced by IVF, use of adult stem cells, deriving stem cells from embryos produced by somatic cell nuclear transfer, stem cell management and oversight mechanisms.

Status: Study in progress.

(8) A survey study on decision-making in prenatal testing for Down syndrome by advanced maternal age pregnant women in Hong Kong
( This study is a collaboration with the Department of Obstetrics and Gynaecology, Queen Mary Hospital and the Prenatal Diagnostic and Counselling Centre, Tsan Yuk Hospital)

The overall purpose of this study is to understand the decision-making process and explore the degree of decision-making autonomy of pregnant women of advanced maternal age (35 years or older) undergoing prenatal testings for Down syndrome.

The study will (a) reveal whether pregnant women are able to differentiate between the various available prenatal testing procedures and to understand the implications, advantages and shortcomings of each option to facilitate subsequent decision-making, (b) reveal the degree of directiveness of health professional's counselling of pregnant women during the counselling process to see if pregnant women may feel obliged to follow their advice which may or may not be consistent with their preference, (c) identify issues that may facilitate or hinder the decision-making process of pregnant women with regard to prenatal screening and prenatal diagnosis, and (d) reveal what factors determine pregnant women of advanced maternal age in making decisions in selecting a particular prenatal test amongst the available alternatives.

Status: Project completed.

(9) A Qualitative Study of the Perceptions of Medical Professionalism held by Faculty Preceptors, Residents, Interns, Nurses, Medical Students of HKU Medical School and Patients of Queen Mary Hospital
( Principal Investigator: Professor Edwin C Hui; Co-Investigators: Dr Danny Leung, Medical Ethics Unit, Li Ka Shing Faculty of Medicine, HKU)

Medical Professionalism (MP), an area emphasizing professional conduct and values of healthcare professionals (HCP), has gained increasing attention. It has been pointed out that in recent decades MP is declining in the West and several efforts have been made to remedy this situation. For instance, the Medical Schools Objective Project (1999) in the U.S. has produced guidelines to emphasize the importance of MP in medical education and in 2002 a Physician Charter on medical professionalism entitled ‘Medical Professionalism in the New Millennium: a Physician Charter’ was issued. [1] Like other leading medical schools, the LKS Faculty of Medicine regards MP as an important component of medical education. To improve the quality of our MP teaching, a good understanding of how local HK medical faculty preceptors, residents, interns, nurses, medical students and patients perceive MP is important. For it will help us to make our MP teaching more agreeable to the HK cultural and legal setting. The present study adopts a qualitative approach, aiming at collecting views about the attributes that professional doctors should possess. [2] Faculty preceptors, medical students and patients etc. will be interviewed individually. We believe that this project will help to identify the personal qualities, values and attitudes that Hong Kong medical graduates should equip themselves with; and will help to develop strategies for improving MP in Hong Kong.

[1] P. Wagner, J. Hendrich, G. Moseley & V. Hudson, ‘Defining Medical Professionalism: a Qualitative Study’, Medical Education, 2007; 41: 288-294, pp. 288-289.
[2] For similar studies, see, for instance, V. Jha, H. L. Bekker, S. R. G. Duffy & T. E. Roberts, ‘Perceptions of Professionalism in Medicine: a Qualitative Study’, Medical Education, 2006; 40: 1027-1036; and K. V. Mann, J. Ruedy, N. Millar & P. Andreou, ‘Achievement of Non-cognitive goals of Undergraduate Medical Education: Perceptions of Medical Students, Residents, Faculty and Other Health Professionals’, Medical Education, 2005; 39: 40-48.

Status: Report write-up in progress

This study aims at (1) understanding the ELSI awareness of HKU genomic science researchers and members of the general public; (2) analyzing their views and setting up some advices on the ethics of genomic research which are suitable for the HK cultural setting. (3) promoting ELSI awareness.
Genomic science has extensive applications for medicine and the risks and benefits of genomic medicine are far from certain. It has been recognized by pioneering genomic research institutes that this field of scientific endeavor has tremendous ethical, legal and social implications, such as informed consent problems specific to genomic research, protection of genetic data, problems concerning return of genetic data to specimen donors, and genetic discrimination by employers or insurance companies. [1] Hence, genomic research requires appropriate ethical guidance. Failure to do so might cause harm to the public, such as violation of individual’s autonomy, infringement of privacy, discrimination and unnecessary anxiety. Eventually this might result in the public’s unwillingness to participate in genomic research and to receive genomic medicine.
This present study takes the form of qualitative interviews, in which we will discuss some ELSI issues with the SRT genomic science researchers and members of the general public. Through the interviews, we will collect views from different perspectives; and then we will set up some ethical advices which can balance the interests of different parties. The expected contributions would include a paper publishable in recognized journals and a booklet to be distributed to the general public for promoting ELSI awareness.

[1] See, for instance, E. W. Clayton, ‘Ethical, Legal and Social Implications of Genomic Medicine’, The New England Journal of Medicine, 2003; 349 (6): 562-8; and T. Claufield, A. L. McGuire, M. Cho et al., ‘Research Ethics Recommendations for Whole-Genomic Research: Consensus Statement’, PloS Biology, 2008; 6 (3): 433-5.

(11) Genetic discrimination in Hong Kong: a qualitative and quantitative study

The rapid advance of genomic science has brought medicine into a new era. Nowadays, scientists are able to identify genetic markers for several diseases. More diseases are found to be causally related to one’s genes and genetic testing has been increasingly recognized as an important tool for identifying genetic predispositions to diseases. Whereas genetic testing allows individuals to know their genetic susceptibility, so that they can take early actions to prevent the onset of disease and consequently reduce health care costs for themselves and society, [1] it also has many drawbacks. One of these problems, which has been seen as substantial, spreading and alarming, is genetic discrimination (GD).
It has been pointed out that people with genetic disease might fear for being discriminated and this fear could be harmful to the society in many ways: first, people with such a fear are likely to avoid doing genetic tests and consequently they will not realize the potential benefits of genomic medicine. Second, the fear is a serious barrier to the advance of genomic science: people who worry about GD tend to refuse to participate in genomic/genetic research. Third, these people might hide their genetic information in front of their doctors and as a result they might not receive the best diagnosis that they should have otherwise obtained. Fourth, delayed preventive measures and therapeutic treatments due to the fear for being discriminated can lead to higher healthcare costs. [2]
In regard of this, we find that understanding public concern about GD in Hong Kong is important because it might reveal whether and how the fear of GD is looming in this city. In the present study, we will collect opinions and experience (if any) concerning GD by interviewing people at risk for genetic diseases. The data collected will then be used to develop a quantitative survey. Our results might inform policy makers of possible strategies for minimizing GD in Hong Kong.

[1] Debra L. Ness, Alice M. Weiss, Myra Clark-Siegel, Courtney A. Rogers, Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People, National Partnership for Women & Families, 2004, p. 1.
[2] Ibid., pp. 1-15.

Status: Study in progress.

Other Publications

AREA #1
On medical professionalism and institutional ethical practices

1. “Doctors as fiduciaries: do medical professionals have the right not to treat?”Poiesis & Praxis (2005) 3: 256-276
2. “The Patient-surgeon Relationship Parts I & II: Its Professional Nature and Moral Implications”, Asian J Oral Maxillofac Surg 2005; 17(3):151-156; 17(4): 210-216
3. “The centrality of patient-physician relationship to medical professionalism: an ethical evaluation of some contemporary models”, Hong Kong Med J. (2005) Vol. 11, No. 3: 222-223
4. “The contractual model of the patient-physician relationship and the demise of medical professionalism”, Hong Kong Med J. (2005) Vol. 11, No. 5: 67-69
5. “Doctors as fiduciaries: a legal construct of the patient-physician relationship”, Hong Kong Med J. (2005) Vol. 11 N
6. “The Contemporary Healthcare Crisis in China and the Role of Medical Professionalism”, Accepted for publication in Medicine and Philosophy, Jan, 2010

AREA #2
On the ethical and social implications of genomic science and stem cell research

7. "Ethical, Legal, Social Implications of prenatal and preimplantation genetic testing for cancer susceptibility" Ethics, Bioscience and Life, (RBM Online) Vol. 19 – Suppl. 2, Nov., 2009, pp. 23-33
8.“Reflection on Some Ethical Concerns of Human Stem Cell Research” The Hong Kong Medical Diary, April 2007, Vol. 12, No. 4: 30-33
9. “Ethical principles and oversight policies for human stem cells” Medicine and Philosophy, (Chinese) Feb 2006, Vol. 27, No. 2: 1-5 & Mar 2006, Vol. 27, No. 3: 20-23
10. “The Ethics of Fertility Cryopreservation in Young Cancer Patients” in Fertility Cryopreservation, Ri-Cheng Chian and Patrick Quinn (eds), Cambridge University Press, in print and to be published in Spring 2010

AREA #3
The use of Advance Care Planning and Advance Directives to improve end-of-life care

11. “The Living Will – Pitfalls, Benefits and a Way Forward” Hong Kong Med J. (2007) Vol. 13, No. 6, pp. 493-495
12. “Legalization of physician-assisted suicide (PAS) and active voluntary euthanasia (AVE) – implications for doctors (Part I)”, HKMA News, Dec, 2007, p. 34 & Jan., 2008, p. 46
13. “The ‘best interests’ of mentally incapacitated patients without a living will” Hong Kong Med J. (2008) Vol. 14, No. 1, pp. 78-80

AREA #4
The influence of Chinese culture on the ethical practice of medicine in Hong Kong

14. “Chinese Bioethics” in The Cambridge Textbook of Bioethics, Peter A. Singer and A.M. Viens (eds.) Cambridge: Cambridge University Press, 2008
15. “The SARS Epidemic in Hong Kong 2003: Interplay of Law, Medicine and Ethics” in The Nexus of Law and Biology: New Ethical Challenges, Barbara Hocking (ed.) Ashgate Publishing Ltd, 2009
16. “Parental Refusal of Life-Saving Treatments for Adolescents: Chinese Familism in Medical Decision-Making Re-Visited” Bioethics, Vol. 22, No. 5, 2008 pp. 286-295
17. “Hospice care and Chinese religions” in Religious Understandings of a "Good Death" in Hospice Palliative Care, Coward H. and Stajduhar K. I. (eds.), SUNY Press, 2011

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Last modified: 14 June 2010