Moral and Legal Guidelines for Genetic Editing [Raboan Discussion Forum]

On Wednesday (24/5), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum. The topic discussed was the Moral and Legal Guidelines for Genetic Editing. The speaker for this discussion was Prof Benjamin Gregg (expert in epigenetics) and it was moderated by dr Wika Hartanti, MIH .

Epigenetics is the study of how a person’s behaviour and environment can change the genes in their body. A genome is all of an organism’s genetic information. The germline consists of the cells that form the egg, sperm, and the fertilized egg. They pass on their genetic material to the offspring.

Prof. Gregg explained that genetic editing involves changing the genetic material of living organisms by inserting, replacing, or deleting DNA sequences. There are several problems in the application of genetic editing related to moral and legal guidelines.

Some frequently asked questions are:

  1. “Could genetic manipulation emancipate humanity from genetic diseases?”
  2. “Should parents have a right to determine the best genetic inheritance for their future children?”
  3. “Will people in the future have a right to be free from genetic alteration?”

General principles to guide the regulation:

  1. Standards for regulation guided by several questions such as
  2. Human capacity for critical self-reflection: an aspect of entwinement of human cognition and human made culture.
  3. Political bioethics does not view human nature as a static Essence with innate properties, rather political bioethics views Human Nature as a dynamic co-evolution of biology and culture.
  4. political bioethics stresses cultural adaptation over biological adaptation as a species that constructs itself mainly in culture humankind accomplishes most of its tasks in communal life through cultural learning.

Prof. Gregg said that genetic manipulation can be justified when considering what kind of genetic modification will serve the interests of future generations. The interests and well-being of individuals in the future also require an awareness of the responsibilities of the current generation toward the next generation.

Prof. Gregg argues that the embryo is not a person. If we define a person as something more than the potential to become someone biologically, it means culture as well. further an embryo doesn’t’ have ability to veto, of course it cannot veto the planned genetic manipulation from which the future person will develop. According to the Prof. Gregg’s argue that a future person’s overriding interest in avoiding an otherwise avoidable genetically based incapacity for decisional autonomy. The primary concern should be the future person’s interest in avoiding any genetically derived incapacity for decisional autonomy, which wouldn’t be preventable. because it preserves the future persons decisional autonomy.

Autonomy vs Paternalism [Raboan Discussion Forum]

Center for Bioethics and Medical Humanities (CBMH FK-KMK UGM) held Raboan Discussion Forum last Wednesday (17/5). The discussed topic on the forum was “Autonomy VS Paternalism”. CBMH FK-KMK UGM, as the organizer, invited Prof. Hans Van Rostenberge from University Sains Malaysia as the speaker. Meanwhile dr. Nur Azid Mahardinata moderated the online discussion forum.

There are four pillars of medical ethics: Autonomy, Beneficence, Non-Maleficience, and Justice. In the discussion, we focus on the first pillar, Autonomy. Medical paternalism, which involves making decisions for patients without their consent, was contrasted with non-paternalism in medicine. For example, a patient refusing a life-saving surgery raises questions about the Autonomy of parents in pediatric cases. Especially when dealing with severe conditions like newborns with severe jaundice and brain issues.

Shared decision-making can be used as an alternative to paternalism. In shared decision-making parents are actively involved in the decision-making process. The importance of presenting all the facts to parents and adopting an empathetic approach need to be more emphasized. Publishing mortality and morbidity figures of hospitals can be explored because it can help the public make informed choices and compare survival rates for conditions like heart disease. However, these figures have potential issues, such as hospitals avoiding severe cases to maintain better statistics.

Unplanned Complication and How to Ethically Deal With it? [Raboan Discussion Forum]

Wednesday (13/4), the Center for Medical Bioethics and Humanities again held the Raboan Discussion Forum. The topics discussed at this event were Unplanned Complication and How to Deal with It. The speaker on this topic was Dr. dr. H. Sophan Yahya Warnasouda, Sp.OT and Traumatology, Master of Health Law, a bioethicist from the Indonesian Bioethics Forum. Meanwhile, the moderator is dr. Tiea Khatija.

In medicine, ethics has an important role in life. So that its application covers all areas of life, including in health services. Doctors have the obligation to follow the regulations stipulated in KODEKI Year 2012 Article 1 and Law of the Republic of Indonesia Number 29 Year 2004 concerning Medical Practice. 

The purpose of ethics education in medical education is to make prospective doctors more humane and have intellectual and emotional maturity. The Principles of Medical Ethics contain four (4) principles: autonomy, beneficence, nonmaleficence, and justice. Ethics related to the medical profession are recorded in the form of the Indonesian Code of Medical Ethics, namely: general obligations, obligations of doctors to patients, obligations to colleagues and obligations of doctors to themselves. 

In KODEKI, actions or actions have been regulated categories of violations, namely: purely ethical and ethical violations. The Indonesian Disciplinary Honor Council explained that communication errors caused 45% of disciplinary infractions. So communication in health services is very important. Doctors who make mistakes are responsible for ethical, disciplinary, legal, and responsibility to God. 

So Informed Consent is needed to avoid complications. The doctor must give Inform Consent so that the information that needs to be conveyed using language that the patient can understand. 

So that ethics are needed to create behavior, behavior is not only about being given information about which is good which is bad, which is okay which should not be in accordance with the code of ethics and then can change its behavior, but it needs sustainable environmental conditions, from students to becoming doctors, it needs to be escorted by meetings that discuss ethics, so that it can sharpen and still maintain medical ethics. Therefore ethics are constantly required in medicine. 

 

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Unplanned Complication and How to Ethically Deal With it – Dr. dr. H. Sophan Yahya Warnasouda, Sp.OT MHKes

 

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Business Ethics [Raboan Discussion Forum]

Wednesday (05/4), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum again. The topic discussed at this event was Business Ethics. The speaker on this topic is Dr. Peter Johannes Manoppo, a Bioethicist from the Indonesian Bioethics Forum. Meanwhile, the moderator was Nathan Agwin Khenda.

The business makes one’s living because it can make money, products, and services. However, the increase in population is inversely proportional to the amount of human and natural resources; this can cause ethical problems. The thing to note is that when we study science, we will find gold fields, while when we look at ethics, we will find minefields.

A business person must have creativity, innovation, novelty, value, execution, pioneering, ethical ground, and empowering business. In addition, companies must respect all business stakeholders, including management, workforce, customers, suppliers, competitors, regulators, other corporate citizens, and society because all of these things can do a business last a long time.

The UNDP goals contain 17 SDGs, namely sustainable growth. Here there are many themes on health, education, and climate change; there are also themes concerning economic development and infrastructure. Right now, the industry has to innovate, but human resources don’t exist, and there are more and more human resources. Moreover, the principle of the UNDP Global Goals is to seek peace for all human beings. Therefore, it can be used as a guide in business ethics.

There are four pillars of business management, business analysis, learning and leadership development, strategic partnerships, and funding opportunities. These four Pilat must have the correct ethical foundation to run well. Therefore it is necessary to have an ethics committee conducting business to pay attention to the following matters, Sexual harassment, Diversity & discrimination, Bullying, Health & Safety, Environmental protection, Accounting practices, Data privacy, and Theft.

Businesses should improve human welfare & prosperity through good business governance based on the four pillars of business management. When doing business, sometimes there are competing or conflicts of interest in business, but all business stakeholders should avoid this. Social responsibility is essential to the morality of business, internally & externally.

 

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dr. Peter Johannes Manoppo, SpB, MBIO, FINACS, FiCS. – Business Ethics

 

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Seeking Treatment in a Neighboring Country, What Are the Ethical Aspects? [Raboan Discussion Forum]

On Wednesday (29/03),  Center for Medical Bioethics and Humanities held the Raboan Discussion Forum again. This time, the topic raised was Ethical Aspects When Seeking Treatment In A Neighboring Country. The speaker of the discussion was dr. Effiana with the moderator dr. Tiea Khatija.

Every year the number of Indonesian people seeking treatment in neighboring countries such as Malaysia, Singapore, and Thailand increases. In this discussion, the object of discussion is the city of Pontianak which is near Kuching city in Malaysia.

There are four terms for medical treatment abroad namely health tourism, medical tourism, medical travel (feeling that doctors cannot handle the disease in their origin city), and medical exile (considered as refugees). Nowadays, generally, it’s more common to call it a medical trip.

According to Ormond, two reasons can motivate people to seek treatment abroad: dissatisfaction (dissatisfaction) and limited access or services (disfranchisement). It is also influenced by two factors such as the pull factor perspective (availability of world-class health facilities/services in the country you want to go to) and the push factor perspective (dissatisfaction with health facilities/services in the origin city).

There are several phenomena of medical travel carried out by Indonesian people (especially in Pontianak), namely having experience of being misdiagnosed by doctors in their country of origin, not trusting medical personnel in their country of origin, having experience of being students abroad, having foreign spouses, and working immigrant.

Those who seek treatment abroad have a higher trust in doctors in the destination country. Some of them had satisfying experiences of being treated abroad so that if they got sick again in the future, they would return for treatment there. Feeling that the price is the same as going to Java for treatment, they can already travel together. They also have experience trading in the country, so they seek treatment there because they feel more familiar with the environment.

Medical trips carried out by Indonesian people have a wide impact, so in deciding to seek treatment abroad, careful consideration of ethical issues/aspects is required to carry out the treatment appropriately.

Climate Change and Rural Health Care [Raboan Discussion Forum]

Wednesday (1/03), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum. This time, the topic that we raised was Climate Change and Rural Health Care. The speaker for this discussion was dr. I Nyoman Sutarsa, Ph.D and moderated by dr. Tiea Khatija.

Climate change is anthropogenic emission, such as coal burning activities. So that it will increase in rainfall which causes flooding, prolonged drought can cause food insecurities. If food insecurities have occurred, those who feel the biggest impact are the vulnerable people. Climate change can also cause extreme weathers such as storms, hailstorms, heat waves, and bush fires.

The relationship between climate change and health: in some areas where food supply is difficult, if climate change occurs it will reduce the quantity of products from the agricultural sector. Then if the salt level in the soil increases beyond the limit, it will affect the quality of the food.

Rural Area Challenges: access for health services is still difficult due to its geographical location and making it more difficult to get there. The second challenge is economic welfare, the job opportunities are limited and in the event of a natural disaster it is directly affected and suffers losses (climate dependent sectors). Then there is the cultural background, a family/group that usually suffers from hereditary losses. The last is health equities, the high incidence of infections and disease complications because they are not treated quickly.

There are several Intersecting vulnerabilities such as:

  1. Extreme weather: if there is long drought and too much rainfall, it will affect water or food scarcity.
  2. Food insecurity: when there is a flood, then the transportation route is cut off so that food production and supply chain is disrupted.
  3. Vector borne diseases: causing the expansion of vectors such as dengue or malaria.
  4. Regional increase in pollens and spores causes an exacerbation of respiratory diseases in people who already have congenital asthma. Because there is no pulmonologist in rural areas.

Meanwhile the adaptation strategies strategies are:

  1. Monitoring climate health capacity and vulnerability
  2. Trying to prepare primary care when a sudden disaster occurs.
  3. Strengthen the function of the primary health care (Puskesmas) and oversee the distribution of vaccines.
  4. Increasing public education and awareness supported by the community to provide education about the indirect and direct impacts of climate changes.
  5. Develop alert systems or warning systems.
  6. Strengthen food safety control, vaccine programs, vector control, case detection and treatment.
  7. Identify risk indicators and health outcomes from the community.
  8. Improving health workforce capacity in rural areas.

 

Gendered Care and Ethics in Social Research [Raboan Discussion Forum]

Wednesday (22/02) Center for Bioethics and Medical Humanities (CBMH FK-KMK UGM) just held Raboan Discussion Forum. The weekly online forum invited Gita Nasution, Ph.D from Australia National University. She presented her research titled Gendered Care and Ethics in Social Research. The discussion was lead by Erlin Erlina, Ph.D from FK-KMK UGM.

Gita presented her ethnographic study that explores the emergence and dynamics of the baby sitter profession in Indonesia, with a focus on the social and economic factors driving its growth and the aspirations of both employers and workers. The study highlights the gendered nature of care work, with women primarily taking on the role of careers in both domestic and public settings.

The study finds that the rise of the service sector in Indonesia has created a need for child care, which is particularly acute in middle-class families where both parents work. Hiring a child carer/nanny is seen as crucial to support dual income families in looking after their children. Meanwhile, from the worker’s perspective, becoming a baby sitter is often a result of limited employment opportunities and the need to provide for their families.

The study also reveals the dual role of agencies in the baby sitter profession: as a supplier of workers and as a training institution. However, there are challenges in the industry, including mismatched expectations, unskilled workers versus demanding employers, and persisting issues of discrimination and class hierarchy.

Overall, the study shows that the baby sitter profession is a social phenomenon that reflects the transformation of domestic work and sheds light on how people adapt to changing social and economic circumstances. While care work has become more professionalized, there remains a power dynamic between employers and employees, and care work remains a gendered profession.

 

A Dialogical Approach to Clinical Ethics Support for Critical Yet Respectful Learning [Raboan Discussion Forum]

Center for Bioethics and Medical Humanities (CBMH FK-KMK UGM) held Raboan Discussion Forum last Wednesday (15/2). The discussed topic on the forum was “A Dialogical Approach to Clinical Ethics Support for Critical Yet Respectful Learning.” CBMH FK-KMK UGM, as the organizer, invited Prof. Bert Molewijk from UMC University of Amsterdam as the speaker. dr. Wika Hartanti MIH also moderated the online discussion forum.

Prof. Bert said that a dialogical approach to ethics is crucial for meaningful engagement and understanding. Ethics plays a vital role in clinical practice. Ethics can provides a framework for making morally sound decisions and ensures the well-being of patients. In addition, ethics is important because it upholds the integrity of the healthcare professionals and fosters trust in professional relationships.

Ethical challenges can arise in healthcare, and addressing them requires open dialogue, reflection, and a consideration of theoretical frameworks. There are various areas of ethics, such as decision-making, resource allocation, and end-of-life care. In healthcare in Norway, for example, ethical challenges include patient autonomy, confidentiality, and balancing individual rights with societal interests.

Moral distress can occur when healthcare professionals face personal values conflict with their professional duties. It highlights the significance of ethical discussions and decision-making processes to address moral dilemmas effectively. By engaging in ethics discussions and decision-making processes, healthcare professionals can navigate moral dilemmas, promote fairness and justice, and strive for the best possible outcomes for individuals.

 

Bioethical Problems in Women’s Surgical Methods of Contraception [Raboan Discussion Forum]

Wednesday (8/2), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum. The topic that we raised was Bioethical Problems in Women’s Surgical Methods of Contraception. The speaker for this discussion was Dr. Annisa Ullya Rasyida, dr., M.Si. and moderated by dr. Tiea Khatija.

Women’s Surgical Methods of Contraception (MOW) or female tubectomy or sterilization to close the fallopian tubes, to preventing the pregnancy, because the ovum can’t meet sperm cells. Contraception can be done if there are indications and/or the couple doesn’t want to have more children (BKKBN, 2011). One of the indications for someone that use the MOW contraception is the presence of psychological/physical disturbances when the woman is pregnant again. Only 44.5% of MOW acceptors knew about the side effects of using that contraception. MOW contraceptive users can only give birth with caesarean section method is maximum of 3 times. The use of MOW contraception is recommended for mothers who have heart defects that are quite serious.

New Sense of Bioethics:

  1. Belief in God or Faith: doctors being an intermediator to help patients, but God determines the outcome. Patient like to stubborn, because they feel that death is in God’s hand, so they still want to try.
  2. Respect for others: doctors respect the wishes of patients and do not force patients to sign informed consent. The patient has been explained the action procedure, but when the formula Is not clearly written and there is a risk, the patient blames the doctor.
  3. Beneficence: doctor tries to help patient, in this case the patient feels loss in the future because she can’t get pregnant again
  4. Non maleficence: the doctor tries to save the patient’s life. In this case the patient was saved by being advised to be sterile because he had a history of the disease. But, turns out patient wants to get pregnant again and she knows that she can’t, the patient feels aggrieved.
  5. Social justice for all: doctors help patients regardless of status.

The absence of the word “permanent sterile” on the informed consent sheet make an opportunity to bring the matter into the realm of law. The response: verbal consent is sufficient, so written informed consent is only a confirmation of what has been previously agreed upon. However, it would be better if the informed consent was written in full of the purpose, benefits and risks of an action/operation. Then effective communication builds trust between doctors and patients.

Abandonment of Ethics, Early Directions to Violation of the Law [Raboan Discussion Forum]

Wednesday (01/02) Center for Bioethics and Medical Humanities Faculty of Medicine Public Health and Nursing held a Raboan Discussion Forum. The virtual forum raised the topic Abandonment of Ethics, Early Directions to Violation of the Law, presented by Dr. dr. Siswanto Sastrowijoto, Sp. ENT-KL (K), MH. Meanwhile, the moderator for the discussion was dr. Galuh Dyah Fatmala.

The dominant factor in professionalism is a combination of relevant intellectual capacity, necessary skills, adherence to moral and ethical standards, and the ability to act as an agent of change. In the context of medical professionals, neglecting ethical standards can lead to unprofessional behavior, which may result in malpractice. Several criteria support the legal action of medical malpractice, such as violating professional standards, operational procedures, informed consent, doctor-patient confidentiality, and ethical and moral principles. In addition, failure to meet patients’ medical needs and violating their rights are grounds for legal action.

Indonesian Law No. 29/2004 stipulates the obligations of doctors and patient’s rights, including providing medical services according to professional and standard procedures, referring patients to other doctors with better expertise, maintaining patient confidentiality, providing emergency medical assistance, and continually improving their knowledge. Ethical violations by medical professionals against patients are classified as mild, moderate, and severe, with corresponding sanctions ranging from counseling to dismissal from professional organizations. Ethics violations can lead to disciplinary and legal sanctions, including revocation of practice permits and imprisonment. In addition, providing false medical statements is punishable by up to four years in prison under the Penal Code.