Wednesday (09/08), Center for Medical Bioethics and Humanities, Faculty of Medicine, Public Health, and Nursing, Gadjah Mada University held Raboan: International Collaboration in collaboration with International Medical University Malaysia. The boldly held event raised the topic of Student Empowerment: Professionalism & Ethical Responsiveness, which was presented by Dr. Serena In from IMU Malaysia. Meanwhile, the moderator who led the discussion was Dr. Wika Hartanti MIH from CBMH FK-KMK UGM.

Professionalism is an important thing to be mastered by students, especially medical students. Professionalism and Ethical Responsiveness emphasize the commitment of physicians and healthcare professionals to excellence, patient well-being, and the health needs of society. For students to have professionalism and ethical responsiveness, such as integrity, accountability, respect, and professional commitment, it is necessary to involve various stakeholders in medical education and patient care.

Dr. Serena highlighted the competencies of good ethical education, including the ability to identify ethical issues, knowledge of aspects, self-reflection, and making ethical decisions in critical situations. Methods that can be taken include conducting open dialogues, simulations, case studies, and workshops in order to develop skills and understanding of complex ethical issues. So students can explore their attitudes, manage emotions, and engage with different perspectives.
Dr. Serena suggested that lecturers can encourage students to be aware of how ethical issues can be resolved in clinical practice. She also encourages students to dialogue and interact with others to determine whether students have ethical abilities in clinical practice.

The Center for Bioethics and Medical Humanities (CBMH FK-KMK UGM) again held the Raboan Discussion Forum on Wednesday (26/07). The weekly forum raised the topic Bioethical Problems in Child Marriage. On this occasion, the speaker was Dr. Pinky Saptandari, Dra., M.A. Meanwhile, the moderator of the discussion was dr. Tiea Khatija.

The problem of child marriage is an issue of violation of the rights of children and women, both from a legal, political, health, and social perspective. This issue involves many scientific disciplines, such as law, medicine, psychology, anthropology, and social affairs. Child marriage contributes to stunting, maternal mortality, and educational problems. Even though there is a legal umbrella, such as laws and international conventions, marriage dispensation is still easy to obtain. Culture, tradition, and religious interpretations also influence this issue.

Addressing child marriage through a comprehensive approach, integrating related government programs, and involving cross-sectoral and cross-disciplines is essential. The world of education must play a role in overcoming this problem by involving students, conducting research, outreach, and providing education. Integrating human rights issues into the curriculum and developing and applying wise bioethics is also necessary.

All parties, including the government, education, media, and society, must collaborate to reduce the number of child marriages, which will ultimately contribute to the progress of the nation and state.

Wednesday (21/6), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum. The topic that we raised was Patient Preference VS Family Preference in Palliative Care. The speaker for this discussion was Dr. Christantie Effendy, S.Kp., M.Kes. and moderated by dr. Galuh Dyah Fatmala.

The family in Indonesia is consists of extended family, so making decisions cannot be based on personal preferences. Elderly people in Indonesia are often not the important to have the opportunity to express their opinions, as they are perceived as lacking competence in decision-making.

Patient is a person who is waiting for or undergoing medical treatment and care. The word patient comes from a Latin word meaning to suffer or to bear. Traditionally, the person receiving health care has been called a patient. A client is a person who engages the advice or services of another who is qualified to provide this service. The term client presents the receivers of health care as collaborators in the care, that is, as people who are also responsible for their own health.

Promoting Patient centred care from diagnosis to end of life requires a better understanding of physical, psychological, social, and spiritual coping factors in advanced cancer. PCC makes the client and his or her family an integral part of the care team, and as such they collaborate with health-care professionals in the decisions that impact on the care that they receive.

8 dimensions of patient centered care:

• Patient preferences: There is a need to be honest about the patient’s illness and educate them so they can actively participate in deciding the best solution for their disease.
• The Role of Healthcare Workers
• The concept of family caregivers: Sometimes because they really love patient, many relatives does not ask about the patient’s opinion, assuming that the best decisions should come from the family.
• The concept of decision-making autonomy: In challenging disease situations where a cure is difficult to do, the patient should be given the opportunity to express their desires and make decisions together.
• Ethical Dilemma
• Advance Care Planning

The communication gap can make patients more stressed because they don’t know what illness they have or how long the treatment will take. Proper communication with patients must be carried out so that we understand the patient’s wishes and level of understanding. There are still difficulties for healthcare workers to convey bad news to patients about their health condition. The COVID-19 phenomenon has caused a change in attitude towards sharing sad news, so the patient’s family no longer considers painful facts about the patient as taboo.The phases of the palliative care pathway :

• The first phase : when diagnosed
• The middle phase : constituted the time between the early phase and the terminal phase
• The terminal phase : comprised the last weeks and days before death

Palliative home-based care is a good choice for patients because the best indicator of the end of life is when they pass away peacefully at home. But healthcare workers still need to monitor the progress of the condition of patients being treated at home.

Five levels of involvement:

• Contributing to action sequences
• Influencing the problem definition
• Sharing the reasoning process
• Influencing decision making
• Experiencing emotional reciprocity

4 boxes method – Facilitating ethical and legal practice:

• Clinical indications: Sort out which therapies are still effective and which are no longer effective.
• Patient preferences: Involve the patient in deciding something related to their life.
• Quality of life: The patient’s wishes for food/activity need to be aware because it can help patient to be more enthusiastic about maintaining good health (provided it is monitored).
• Contextual features: Are there any external factors that affect the patient’s mental well-being?

A Seven Step Model

• Determine the facts.
• Define the precise ethical issue.
• Identify the major principles, rules, and values.
• Specify the alternatives.
• Compare values and alternatives.
• Assess the consequences.
• Make a decision.

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.