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Ethical Concerns About Human Genetic Enhancement in the Malay Science Fiction Novels

Isa NM, Hj Safian Shuri MF

Sci Eng Ethics, 2018 02;24(1):109-127.
PMID: 28281149 DOI: 10.1007/s11948-017-9887-1

Advancements in science and technology have not only brought hope to humankind to produce disease-free offspring, but also offer possibilities to genetically enhance the next generation's traits and capacities. Human genetic enhancement, however, raises complex ethical questions, such as to what extent should it be allowed? It has been a great challenge for humankind to develop robust ethical guidelines for human genetic enhancement that address both public concerns and needs. We believe that research about public concerns is necessary prior to developing such guidelines, yet the issues have not been thoroughly investigated in many countries, including Malaysia. Since the novel often functions as a medium for the public to express their concerns, this paper explores ethical concerns about human genetic enhancement expressed in four Malay science fiction novels namely Klon, Leksikon Ledang, Transgenesis Bisikan Rimba and Transgenik Sifar. Religion has a strong influence on the worldview of the Malays therefore some concerns such as playing God are obviously religious. Association of the negative image of scientists as well as the private research companies with the research on human genetic enhancement reflects the authors' concerns about the main motivations for conducting such research and the extent to which such research will benefit society.

Matched MeSH terms: Research Personnel/ethics; Cloning, Organism/ethics*; Genetic Enhancement/ethics*
Fulltext Developing a competency framework for health research ethics education and training

Tackett S, Sugarman J, Ng CJ, Kamarulzaman A, Ali J

J Med Ethics, 2022 Jun;48(6):391-396.
PMID: 33811112 DOI: 10.1136/medethics-2021-107237

Health research ethics (HRE) training programmes are being developed and implemented globally, often with a goal of increasing local capacity to assure ethical conduct in health-related research. Yet what it means for there to be sufficient HRE capacity is not well-defined, and there is currently no consensus on outcomes that HRE training programmes should collectively intend to achieve. Without defining the expected outcomes, meaningful evaluation of individual participants and programmes is challenging. In this article, we briefly describe the evolution of formal education in HRE, articulate the need for a framework to define outcomes for HRE training programmes, and provide guidance for developing HRE competency frameworks that define outcomes suited to their contexts. We detail critical questions for developing HRE competency frameworks using a six-step process: (1) define the purposes, intended uses and scope of the framework; (2) describe the context in which practice occurs; (3) gather data using a variety of methods to inform the competency framework; (4) translate the data into competencies that can be used in educational programmes; (5) report on the competency development process and results and (6) evaluate and update the competency framework. We suggest that competency frameworks should be feasible to develop using this process, and such efforts promise to contribute to programmatic advancement.

Matched MeSH terms: Ethics, Research
Fulltext Justice Is the Missing Link in One Health: Results of a Mixed Methods Study in an Urban City State

Lysaght T, Capps B, Bailey M, Bickford D, Coker R, Lederman Z, et al.

PLoS One, 2017;12(1):e0170967.
PMID: 28129409 DOI: 10.1371/journal.pone.0170967

BACKGROUND: One Health (OH) is an interdisciplinary collaborative approach to human and animal health that aims to break down conventional research and policy 'silos'. OH has been used to develop strategies for zoonotic Emerging Infectious Diseases (EID). However, the ethical case for OH as an alternative to more traditional public health approaches is largely absent from the discourse. To study the ethics of OH, we examined perceptions of the human health and ecological priorities for the management of zoonotic EID in the Southeast Asia country of Singapore.
METHODS: We conducted a mixed methods study using a modified Delphi technique with a panel of 32 opinion leaders and 11 semi-structured interviews with a sub-set of those experts in Singapore. Panellists rated concepts of OH and priorities for zoonotic EID preparedness planning using a series of scenarios developed through the study. Interview data were examined qualitatively using thematic analysis.
FINDINGS: We found that panellists agreed that OH is a cross-disciplinary collaboration among the veterinary, medical, and ecological sciences, as well as relevant government agencies encompassing animal, human, and environmental health. Although human health was often framed as the most important priority in zoonotic EID planning, our qualitative analysis suggested that consideration of non-human animal health and welfare was also important for an effective and ethical response. The panellists also suggested that effective pandemic planning demands regional leadership and investment from wealthier countries to better enable international cooperation.
CONCLUSION: We argue that EID planning under an OH approach would benefit greatly from an ethical ecological framework that accounts for justice in human, animal, and environmental health.

Matched MeSH terms: Environmental Health/ethics; Public Health/ethics*; Global Health/ethics*
Fulltext Are medical students confident in taking a sexual history? An assessment on attitude and skills from an upper middle income country

Ariffin F, Chin KL, Ng C, Miskan M, Lee VK, Isa MR

BMC Res Notes, 2015;8:248.
PMID: 26082003 DOI: 10.1186/s13104-015-1220-y

BACKGROUND: Sexual history training during undergraduate education is essential for preparing future doctors to handle patients' sexual health concerns. The purpose of this study was to assess the attitudes and perceptions of final-year medical students in Malaysia toward sexual history taking and the training they receive from their medical schools.
METHODS: The study used a cross-sectional survey of 379 final-year medical students from three medical schools in Malaysia. Students were asked to rate their attitudes and perceptions regarding training on taking sexual histories using a newly developed questionnaire with good internal consistency (Cronbach's alpha = 0.73). Ethics approval was obtained from the relevant medical schools, and the statistical analysis was conducted using SPSS, Version 20.0.
RESULTS: The mean age of participants was 23.58 ± 0.65 SD. Participants reported high interest in sexual health and felt it was important for doctors to know how to take a sexual history (95%). Among the participants, only half felt comfortable in taking sexual histories from patients. The participants identified cultural and religious differences between the doctor and the patient as a potential barrier for discussing sexual health. Participants were aware of their own practice and ability, as well as their limitations, in taking sexual histories. Less than half (46%) felt that the training they received adequately prepared them to take sexual histories.
CONCLUSIONS: This study identified gaps in sexual health training among medical schools in Malaysia. The delivery of sexual health education program should incorporate confidence building and to make students feel comfortable to take sexual histories from patients. The barrier caused by differences in culture or religion between a doctor and a patient may be overcome through cross cultural and cultural competency training. This is important for multi-faith, multi cultural societies such as Malaysia and other similar countries.

Matched MeSH terms: Education, Medical, Undergraduate/ethics; Schools, Medical/ethics; Sexual Behavior/ethics; Reproductive Health/ethics*
Fulltext Scientific misconduct encountered by APAME journals: an online survey

Looi LM, Wong LX, Koh CC

Malays J Pathol, 2015 Dec;37(3):213-8.
PMID: 26712665 MyJurnal

In June 2015, invitations were sent by email to 151 APAME journals to participate in an online survey with an objective of gaining insight into the common publication misconduct encountered by APAME editors. The survey, conducted through SurveyMonkey over a 20-day-period, comprised 10 questions with expansions to allow anecdotes limited to 400 characters, estimated to take less than 10 minutes to complete. Only one invitation was issued per journal, targeting (in order of priority) editors, editorial board members and editorial staff, and limited by email availability. 54 (36%) journals responded. 98% of respondents held Editor or Editorial Board positions. All respondent journals have editorial policies on publication ethics and 96% provide instructions related to ethics. 45% use anti-plagiarism software to screen manuscripts, the most popular being iThenticate, CrossCheck and Turnitin. Up to 50% of journals had encountered studies without IRB approval. Author misconduct encountered were (in rank order): plagiarism (75%), duplicate publication (58%), unjustified authorship (39%), authorship disputes (33%), data falsification (29%), data/image manipulation (27%), conflict of interest (25%), copyright violation (17%) and breach of confidentiality (10%). Reviewer misconduct encountered were: conflict of interest (19%), plagiarism (17%), obstructive behavior (17%), abusive language (13%) and breach of confidentiality (13%). Notwithstanding the limitations of the survey and the response rate, a few insights have been gained: (1) the need for strengthening the ethical culture of researchers/authors and reviewers, (2) anti-plagiarism software can improve plagiarism detection by about 15%, and (3) the need for technical support to detect plagiarism, duplicate publication and image manipulation.

Matched MeSH terms: Periodicals as Topic/ethics*
Organ transplantation in Malaysia: a social-legal study

Ngah AC

Taiwan Yi Xue Ren Wen Xue Kan, 2005 Sep;6(1-2):39-48.
PMID: 16538765

Kidney and corneal transplants have been undertaken since the seventies although other forms of organ transplantation were lesser known. To date more than 1000 kidney transplants, the majority from living related donors have been performed. Nevertheless heart, lung and liver transplant only had an impact in the nineties. The main reason being, the lack of cadaveric donors, which has hampered the development of organ transplantation in Malaysia. It is instructive to note that the Malaysian society has been rather conservative when it comes to organ transplantation. This is compounded by the Asean culture and value system, which are directly derived from our historical background and religious convictions. However attempts had been made by various organisations such as The Malaysian Society of Transplantation, which was set up in 1994 to create greater awareness on organ donation & transplantation amongst both the healthcare professionals and the public.

Matched MeSH terms: Tissue and Organ Procurement/ethics
Fulltext Genomics and health: ethical, legal and social implications for developing countries

Chee HL

Issues Med Ethics, 2002 Jan-Mar;10(1):146-9.
PMID: 16334919
Matched MeSH terms: Genomics/ethics*
Rather than responding to the past, shape the future instead

Kaur S

Am J Bioeth, 2015;15(6):61-3.
PMID: 26030504 DOI: 10.1080/15265161.2015.1028668
Matched MeSH terms: Ethics, Research/history*
Medical care for people under detention

Ritom MH

Med J Malaysia, 2003 Mar;58 Suppl A:72-7.
PMID: 14556353

Human Rights traditionally refer to rights and freedom that are inherent to every human being. They are based on Human Rights Law and concern the respect for dignity and worth of a person. These rights are universal, inalienable, indivisible, inter-related and interdependent. Members of Societies are detained for varied reasons and are made up of different age groups and gender. The United Nations through its numerous agencies, associated Conventions, Treaties and Resolutions have laid down guidelines that govern the rights of those under detention. Article 5 of General Assembly Resolution 45/111 clearly stipulates that except for those limitations that are demonstrably necessitated by the fact of incarceration, all prisoners shall retain the human rights and fundamental freedom set out in the Universal Declaration of Human Rights. As such, the Medical and Health Care of People under Detention should not be any different from the other members of societies. The Right to Health and Medical Care is stipulated under various Articles contained in the UN Bill of Human Rights (UDHR, ICCPCR and ICESCR) as well as other Conventions, e.g. Convention against Torture (CAT), Convention on Rights of the Child (CRC) and Convention for the Extinction of all Forms of Discrimination against Women (CEDAW). The United Nations have also developed specific guidelines and instruments for Treatment of People under Detention. These include the General Assembly Resolution 45/111 December 1990 elucidating the Basic Principles for Treatment of Prisoners, ECOSOG resolution 663C and 2076 regarding the Standard Minimum Rules for the Treatment of Prisoners which covers rules pertaining to accommodation and Medical Services, General Assembly Resolution 37/194 on Principles of Medical Ethics relevant to the role of health personnel, particularly Physicians, in the Protection of Prisoners and Detainees against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment.

Matched MeSH terms: Delivery of Health Care/ethics
Medical misadventures

Lewis K

Med J Malaysia, 2003 Mar;58 Suppl A:68-71.
PMID: 14556352

Historical perspective of terminations of unwanted pregnancies in the UK. Moral and ethical considerations imposed by established church's teachings becoming increasingly in conflict with the wishes and expectations of a more secular society. Recognition that illegal abortion was, as a matter of fact available, at great risk to vulnerable girls and women. Eventually public demand and a radical and reforming government led to the current Statutory Framework. Statutory provisions: Offences against the Person Act 1861, Sections 58 and 59; Infant Life Preservation Act 1929 Section 1. Recognition of the limited flexibility allowed by the law in the original restrictive statutory framework. The direction to the jury in July 1938 by Macnaghten J in the case of R. v. Bourne [1939] 1 KB 687, where an eminent obstetrician was acquitted after carrying out an abortion on a young rape victim. Then the modern statutory provisions: Abortion Act 1967, amended by the Human Fertilisation and Embryology Act 1990. The statutory framework provides for healthcare professionals not to have to take part in terminations if they have a conscientious objection to doing so. While there are still fierce challenges from moral pressure groups when any changes in the detail of the law are proposed--such as reducing the maximum gestation period for a lawful termination--as a whole society seems to have accepted the current law. Issues affecting doctors who consider and provide terminations; current medico-legal problems relating to wanted pregnancies that have been lost by reason of clinical negligence, and unwanted children that have been born by reason of clinical negligence.

Matched MeSH terms: Abortion, Induced/ethics*
Social and religious dimensions of unwanted pregnancy: an Islamic perspective

Kasule OH

Med J Malaysia, 2003 Mar;58 Suppl A:49-60.
PMID: 14556350

The concept of 'unwanted pregnancy' is a recent in human history and is associated with social stresses of modern life. The purposes of the law, maqasid al shari'at, and its principles, qawa'id a shari'at, focus on preventing 'unwanted pregnancy', protecting the rights of the fetus and infant, and mitigating the adverse effects of 'unwanted pregnancy' by social measures. 'Unwanted pregnancy' is associated with general social determinants (hedonistic life styles, sexual transgression, addiction to drugs, fear of poverty, and low female status) and specific antecedent causes (sexual crimes, egoistic greed, maternal/fetal disease, and gender discrimination). It is prevented by sexual hygiene, marriage, contraception, deterring sexual crimes, and raising the status of women. The adverse sequelae of 'unwanted pregnancy' (feticide, infanticide, or child abuse and neglect) can be prevented by defending the basic human right of the fetus and infant to life, promoting social institutions for child welfare (nuclear family, extended family, foster care, and open adoption). Closed adoption is forbidden by Law but care in a foster home is allowed and is encouraged if the nuclear and extended families are unwilling or are unable to care for children. Abortion at any stage of pregnancy is a crime against humanity. It is not a solution to the problem but is part of the problem. It will encourage more 'unwanted pregnancies'.

Matched MeSH terms: Abortion, Induced/ethics
The legal aspects of the termination of unwanted pregnancies and the risks faced by the medical doctor: a UK perspective

Gibson C

Med J Malaysia, 2003 Mar;58 Suppl A:36-48.
PMID: 14556349

Historical perspective of terminations of unwanted pregnancies in the UK. Moral and ethical considerations imposed by established church's teachings becoming increasingly in conflict with the wishes and expectations of a more secular society. Recognition that illegal abortion was, as a matter of fact available, at great risk to vulnerable girls and women. Eventually public demand and a radical and reforming government led to the current Statutory Framework. Statutory provisions: Offences against the Person Act 1861, Sections 58 and 59; Infant Life Preservation Act 1929 Section 1. Recognition of the limited flexibility allowed by the law in the original restrictive statutory framework. The direction to the jury in July 1938 by Macnaghten J in the case of R. v. Bourne [1939] 1 KB 687, where an eminent obstetrician was acquitted after carrying out an abortion on a young rape victim. Then the modern statutory provisions: Abortion Act 1967, amended by the Human Fertilisation and Embryology Act 1990. The statutory framework provides for healthcare professionals not to have to take part in terminations if they have a conscientious objection to doing so. While there are still fierce challenges from moral pressure groups when any changes in the detail of the law are proposed--such as reducing the maximum gestation period for a lawful termination--as a whole society seems to have accepted the current law. Issues affecting doctors who consider and provide terminations; current medico-legal problems relating to wanted pregnancies that have been lost by reason of clinical negligence, and unwanted children that have been born by reason of clinical negligence.

Matched MeSH terms: Abortion, Induced/ethics
Fulltext Good clinical practice: issues and challenges

Merican MI

Med J Malaysia, 2000 Jun;55(2):159-63.
PMID: 19839142
Matched MeSH terms: Clinical Trials as Topic/ethics
Female genital mutilation. Council on Scientific Affairs, American Medical Association

JAMA, 1995 Dec 6;274(21):1714-6.
PMID: 7474278

Female genital mutilation is the medically unnecessary modification of female genitalia. Female genital mutilation typically occurs at about 7 years of age, but mutilated women suffer severe medical complications throughout their adult lives. Female genital mutilation most frequently occurs in Africa, the Middle East, and Muslim parts of Indonesia and Malaysia, and it is generally part of a ceremonial induction into adult society. Recent political and economic problems in these regions, however, have increased the numbers of students and refugees to the United States. Consequently, US physicians are treating an increasing number of mutilated patients. The Council on Scientific Affairs recommends that US physicians join the World Health Organization, the World Medical Association, and other major health care organizations in opposing all forms of medically unnecessary surgical modification of the female genitalia.

Matched MeSH terms: Ethics, Medical*
Emphasizing the experiences of researchers after RCR instructions: Introduction to Responsible Conduct of Research (RCR) in Malaysia

Olesen AP, Amin L, Mahadi Z, Ibrahim M

Account Res, 2019 04;26(3):157-175.
PMID: 30982340 DOI: 10.1080/08989621.2019.1607312

The purpose of this study is to highlight the experiences of individuals who participate in the Responsible Conduct of Research (RCR) training program held at various universities in Malaysia. In response to a mailing request sent to 40 individuals who had undertaken a RCR training program, 15 participants agreed to be interviewed. The results of the study showed that the three main reasons for participating in the training were as follows: anticipation for knowledge gained; personal experience with research misconduct; and establishing a new network of researchers. In terms of the positive effects gained from undertaking the training, the participants highlighted an increased awareness of the issues and problems related to research misconduct; the need to promote integrity in research conduct; a change in the way they conduct their research; and a change in the way they confront and address misconduct. The findings of this study should be valuable for policy makers and those involved in the management of research programs and ethics, as it demonstrated the importance of RCR training in equipping researchers with the necessary knowledge to conduct research responsibly, and to avoid research misconduct.

Matched MeSH terms: Ethics, Research/education*
Response to 'Position statement on ethics, equipoise and research on charged particle therapy'

Jones B, Howick J, Hopewell J, Liew SM

J Med Ethics, 2014 Aug;40(8):576-7.
PMID: 24812333 DOI: 10.1136/medethics-2014-102105

In August 2011, a group of medical doctors, ethicists, academic and medical physicists were asked to debate and reach consensus on the potential need for randomised control trials to test charged particle radiation therapy (CPRT) for treating tumours. The outcome of the meeting was a paper recently published in the Journal of Medical Ethics entitled "Position statement on ethics, equipoise and research on charged particle therapy" by Sheehan et al. However 6 of the 30 meeting participants withdrew from authorship of the 'position statement' because their views were not adequately represented. The 'position statement' did not state our reasons for withdrawing from the statement, which is a considerable omission. We had two principal objections: (1) the case for the benefits to patients and society of randomized trials to test CPRT was not adequately represented, and (2) the complexities and potential harms of CPRT were not clearly stated. In this response we explain and justify our objections. Patients, doctors and policymakers seeking to make independent judgments about whether equipoise exists for the relative benefits of CPRT should therefore read this document alongside the 'position' statement.

Matched MeSH terms: Radiotherapy, High-Energy/ethics*
Fake Graduates

Sorooshian S

Sci Eng Ethics, 2017 06;23(3):941-942.
PMID: 27357573 DOI: 10.1007/s11948-016-9784-z

There is growing concern regarding the erosion of industries' trust in the reliability and validity of university graduates. Fake graduates are described in this letter. This article endeavors to warn of a new version of the scholarly black market, in which theses and dissertations are sold to students seeking to graduate under false pretenses.

Matched MeSH terms: Universities/ethics*
Fulltext Social media: the bane of practitioners?

Bhaskaran D

BJOG, 2017 Feb;124(3):525.
PMID: 28120546 DOI: 10.1111/1471-0528.14295
Matched MeSH terms: Social Media/ethics*
Ethical Concerns When Minors Act as Standardized Patients

Khoo EJ, Schremmer RD, Diekema DS, Lantos JD

Pediatrics, 2017 Mar;139(3).
PMID: 28174202 DOI: 10.1542/peds.2016-2795

When minors are asked to assist medical educators by acting as standardized patients (SPs), there is a potential for the minors to be exploited. Minors deserve protection from exploitation. Such protection has been written into regulations governing medical research and into child labor laws. But there are no similar guidelines for minors' work in medical education. This article addresses the question of whether there should be rules. Should minors be required to give their informed consent or assent? Are there certain practices that could cause harm for the children who become SPs? We present a controversial case and ask a number of experts to consider the ethical issues that arise when minors are asked to act as SPs in medical education.

Matched MeSH terms: Education, Medical, Undergraduate/ethics*
Viva Delay

Yahaghi H, Sorooshian S, Yahaghi J

Sci Eng Ethics, 2017 06;23(3):945-946.
PMID: 27351770 DOI: 10.1007/s11948-016-9795-9

The time delay between submission of a thesis and Viva Voce is intolerable for students. This letter tries to draw the readers' attention to the effect of choosing the right examiner, in order to reduce the Viva Voce delay.

Matched MeSH terms: Universities/ethics*

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