Buku Panduan Tutor Blok Bioethics And Health Law 4 1

BUKU PANDUAN MAHASISWA

BLOK BIOETHICS AND HEALTH LAW 4




SEMESTER V











Penyusun:
dr. Amalia Muhaimin, MSc.
dr. Arini Nur Famila
dr. Gema Citra D.



KEMENTERIAN PENDIDIKAN DAN KEBUDAYAAN
U N I V E R S I T A S J E N D E R A L S O E D I R M A N
FAKULTAS KEDOKTERAN DAN ILMU-ILMU KESEHATAN
JURUSAN KEDOKTERAN
PURWOKERTO
2014
Buku Panduan Tutor Blok Bioethics And Health Law 4 2
DAFTAR ISI

JUDUL .................................................................................................... 1
DAFTAR ISI ............................................................................................. 2
DESKRIPSI BLOK ..................................................................................... 3
LINGKUP BAHASAN DAN KOMPETENSI .................................................. 4
PANDUAN DISKUSI ............................................................................. .... 6
MATERI, NARASUMBER, DAN TUTOR ..................................................... 10
JADWAL KEGIATAN ............................................................................. .... 10
DAFTAR KELOMPOK MAHASISWA .......................................................... 11
Buku Panduan Tutor Blok Bioethics And Health Law 4 3
BAB I


A. Nama Blok : Bioethics and Health Law 4 (BHL4)
B. Kode Blok : KUB 155
C. Ruang lingkup : Ilmu Etika Kedokteran & Hukum Kedokteran
D. SKS : 1
E. Jadwal Pelaksanaan : Semester 5
F. Bidang Keilmuan
Bidang keilmuan yang terlibat dalam blok BHL 4 adalah filsafat, bioetika, hukum
kesehatan, serta genetika. Blok BHL 4 memberikan pendidikan umum kepada mahasiwa
untuk mencapai keterampilan-keterampilan generik sebagai seorang dokter dalam
memahami etika kedokteran yang berhubungan dengan pelayanan kesehatan,
penelitian serta perkembangan teknologi terkini serta sikap peduli terhadap lingkungan
dan masyarakat. Untuk mencapai tujuan tersebut, dalam Blok BHL 4 mahasiswa
mempelajari konsep dasar genetika dan rekayasa genetika, permasalahan etik pada
genetic testing, isu-isu etika dalam reproduksi manusia, aspek hukum dalam reproduksi
serta transplantasi organ dan permasalahan etik pada aborsi.





DESKRIPSI BLOK

Buku Panduan Tutor Blok Bioethics And Health Law 4 4
BAB II
LINGKUP BAHASAN DAN KOMPETENSI

Topik Bioethics & Health Law 4 meliputi konsep dasar genetika dan rekayasa genetika,
permasalahan etik pada genetic testing, isu-isu etika dalam reproduksi manusia dan
transplantasi organ, aspek hukum dalam reproduksi serta donasi dan transplantasi organ,
dan permasalahan etik dan hukum pada aborsi Secara rinci masing-masing tujuan
pembelajaran dapat dijabarkan sebagai berikut:

1. Ethics and Genetics
a. Mahasiswa mampu menjelaskan konsep dasar genetika dan rekayasa genetika
b. Mahasiswa mampu menjelaskan permasalahan etik yang berkaitan dengan
rekayasa genetika
c. Mahasiswa mampu menjelaskan arti mutasi dan bagaimana pengaruhnya
terhadap penyakit genetik
d. Mahasiswa mampu menjelaskan contoh-contoh dari genetically modified
organisms (GMOs) dan alasan diciptakannya GMOs tersebut
e. Mahasiswa mampu menjelaskan tentang the Human Genome Project
f. Mahasiswa mampu menjelaskan tentang the Universal Declaration on the
Human Genome and Human Right

2. Genetic Testing
a. Mahasiswa mampu menjelaskan arti pentingnya informasi genetik pada manusia
b. Mahasiswa mampu menjelaskan permasalahan etik pada genetic testing,
terutama permasalahan privasi dan kerahasiaan menyangkut penyimpanan
informasi genetik
c. Mahasiswa mampu menjelaskan metode-metode dalam mendiagnosis penyakit
genetik sebelum implantasi (preimplantation genetic diagnosis)
d. Mahasiswa mampu menjelaskan metode-metode dalam mendiagnosis penyakit
genetik pada kehamilan (prenatal testing)
e. Mahasiswa mampu mengidentifikasi permasalahan etik yang berkaitan dengan
pengambilan keputusan pada prenatal testing

3. Ethics in reproductive health and technology
a. Mahasiswa mampu menjelaskan konsep dasar kesehatan reproduksi
b. Mahasiswa mampu menjelaskan permasalahan etik pada kesehatan reproduksi
di Indonesia
c. Mahasiswa mampu menjelaskan beberapa teknik bantuan reproduksi (assisted
reproductive technologies)
d. Mahasiswa mampu mengidentifikasi permasalahan etik yang berkaitan dengan
assisted reproductive technologies
e. Mahasiswa mampu memberikan pertimbangan teknologi bantuan reproduksi
maupun kontrasepsi yang tepat untuk masing-masing individu atau pasangan

4. Abortion
a. Mahasiswa mampu menjelaskan pengertian aborsi dari sudut pandang medis
maupun agama
b. Mahasiswa mampu menjelaskan faktor-faktor yang mempengaruhi insidensi
aborsi di Indonesia
Buku Panduan Tutor Blok Bioethics And Health Law 4 5
c. Mahasiswa mampu menjelaskan permasalahan etik pada aborsi termasuk yang
berkaitan dengan pengambilan keputusan pada tindakan terminasi kehamilan
(medical termination of pregnancy)
d. Mahasiswa mampu menjelaskan undang-undang tentang aborsi yang berlaku di
Indonesia

5. Organ Donation
a. Mahasiswa mampu menjelaskan pengertian donasi organ dan transplantasi
organ.
b. Mahasiswa mampu menjelaskan hukum dan aturan tentang donasi organ di
Indonesia dan negara-negara lain.
c. Mahasiswa mampu mengidentifikasi permasalahan etik yang berkaitan dengan
donasi dan transplantasi organ

Buku Panduan Tutor Blok Bioethics And Health Law 4 6
BAB III
PANDUAN DISKUSI KELOMPOK KECIL

SCENARIO 1 (SGD 1)


21 grams
(A. Gonzlez Irritu, 2003)

SYNOPSIS

SCRIPT - Fragment 1

Mary & Paul Rivers have been married for a long time. They are trying to have a
baby because Paul suffers from a heart condition and he doesn't have much time
left. But Mary does not get pregnant and decides to visit a medical center specialized
in reproduction and fertility. A doctor examines her and this scene takes place:

Doctor - All right. You can get dressed now.
Your Fallopian tubes are severely damaged. It, uh, looks like you had some kind of an
infection... that, uh, wasn't taken care of properly. We can try surgery, but I have to
tell you, I think, uh, the probabilities are pretty slim. Look. Excuse me for asking this,
but it's important that you tell me the truth.
Have you ever had an abortion?

Mary - Yes.

Doctor - Any reason?

Mary - I had already separated from my husband when I got pregnant, and I...

Doctor - No. I meant a medical reason.

Mary - My husband's dying.

Doctor - I'm sorry?

Mary - Paul, my husband, he's dying, and I want to have his baby.

Doctor - We can operate then and hope you get pregnant within three or four
months.








Buku Panduan Tutor Blok Bioethics And Health Law 4 7
" 21 gram "
( A. Gonzlez Inarritu , 2003)

SINOPSIS

SCRIPT - 1 Fragment

Mary & Paul Rivers - telah menikah untuk waktu yang lama . Mereka Mencoba
untuk Punya Anak Karena Paulus Menderita dari hati dan jika dia Tidak Memiliki
banyak waktu tersisa . Tujuan Mary Tidak hamil dan Memutuskan untuk
mengunjungi pusat medis khusus dalam reproduksi dan kesuburan . Seorang
dokter memeriksa dan mengambil adegan ini :

Dokter - Baiklah . Anda bisa mendapatkan berpakaian sekarang .
Saluran telur Anda yang rusak parah . Itu, eh , terlihat seperti Anda Memiliki
Beberapa Jenis infeksi ... Artinya , uh , Apakah tidak dirawat dengan benar . Kita
dapat mencoba operasi , tujuan saya harus memberitahu Anda , saya pikir , uh ,
probabilitas cukup tipis . Lihatlah . Maaf untuk jawaban ini bertanya , tujuan itu
utama Bahwa Anda mengatakan yang sebenarnya .
Apakah Anda pernah melakukan aborsi ?

Mary - Ya .

Dokter - Apa alasannya ?

Mary - Aku Telah sudah terpisah dari suami saya ketika saya hamil , dan I. ..

Dokter - Tidak, aku dimaksud alasan medis .

Mary - sekarat suami saya .

Dokter - Maafkan aku ?

Mary - Paul , suami saya , dia sekarat , dan aku ingin - memiliki bayinya .

Dokter - Kita dapat beroperasi kemudian dan berharap Anda hamil Dalam waktu
tiga bulan atau oven .














Buku Panduan Tutor Blok Bioethics And Health Law 4 8


SCRIPT - Fragment 2

A few days later, the couple attends to the clinic in order to talk to the doctor and
arrange the surgery that will allow Mary to become pregnant. At this moment, this
scene takes place:

Doctor - Okay, now, we can schedule the surgery. I could get you in as early as
Monday. Yeah. 9:00 a.m.?

Paul - What's the percentage chance that Mary will get pregnant?

Doctor - Well, I can't offer you a real number on that. Um, you know, there's the
damage from the abortion that wasn't handled properly... the blockage...

Paul - What abortion? What abortion, Mary?

Mary - I can explain.

Paul - Explain what?

Mary - There is an explanation.

Paul - All that drama about artificial insemination Kids names You got pictures of
our friends' babies all over the place. Why? So you can flush it down the toilet?
We've been a fraud for a long time, Mary.

Mary - Oh, yeah? Why didn't you tell me that when you were sick, huh? Or did you
expect one of your girlfriends to come and take care of you?

Paul - You came back because you wanted to. Don't blame me for that.

Mary - I came back to take care of you because I love you.

Paul - Or because you were feeling lonely.
I'm sorry. I'm sorry. I can't keep going like this. The insemination, the child
It's like we're trying to put a Band-Aid on something that's just been bled dry.
It's finished.

Mary - But it... it isn't finished if we give it a chance and have this baby.

Paul - When we could have, you didn't want to.

Mary - We were separated, goddamn it! It's different now!

Paul - Yes, it's different.

Mary - We gonna go? You only know how to think about yourself.

Buku Panduan Tutor Blok Bioethics And Health Law 4 9
SCRIPT - Fragment 2

Beberapa hari kemudian , pasangan melihat ke klinik untuk berbicara dengan dokter dan
mengatur operasi yang Akan memungkinkan Mary Menjadi hamil . Pada saat ini , adegan
ini membutuhkan :

Dokter - Oke , sekarang, kita dapat menjadwalkan operasi . Saya bisa mendapatkan Anda
dalam sedini Senin. Ya . 9:00 ?

Paul - Apa persentase keberuntungan yang Akan Mary hamil ?

Dokter - Yah, aku tidak bisa memberikan nomor nyata pada itu . Um , Anda tahu , ada
kerusakan dari aborsi ... Itu Apakah tidak Ditangani Benar penyumbatan ...

Paul - Apa aborsi ? Apa aborsi , Mary ?

Mary - Aku bisa menjelaskan .

Paul - Jelaskan apa ?

Mary - Ada penjelasan .

Paul - Semua yang drama tentang inseminasi buatan ... Anak nama ... Anda punya foto-
foto bayi teman-teman kita di seluruh tempat . Mengapa ? Jadi Anda bisa flush ke toilet ?
Kami sudah penipuan untuk waktu yang lama , Mary .

Mary - Oh , ya ? Kenapa kau tidak memberitahu saya bahwa When You Were sakit , ya?
Atau apakah Anda harapkan salah satu teman Anda untuk datang dan menjagamu ?

Paul - Anda datang kembali Karena kau ingin . Jangan salahkan aku untuk itu .

Mary - aku datang kembali untuk menjagamu karena aku mencintaimu .

Paul - Sekarang Karena You Were merasa kesepian .
Maafkan aku . Maafkan aku . Aku tidak bisa terus seperti ini . Inseminasi , anak ...
Ini seperti kita sedang mencoba untuk menempatkan Band - Aid pada sesuatu yang hanya
pernah berdarah - kering .
Ini selesai .

Mary - Tapi ... Ini Apakah belum selesai jika kita memberikan kesempatan dan - memiliki
bayi ini .

Paul - Ketika Kita Bisa saja , Anda tidak ingin .

Mary - Kami dipisahkan , sialan! Ini berbeda sekarang !

Paul - Ya , itu berbeda .

Mary - Kami akan pergi? Anda hanya tahu bagaimana untuk berpikir tentang diri Anda .

Buku Panduan Tutor Blok Bioethics And Health Law 4 10
SCRIPT - Fragment 3
Doctor: Deep breath... (Paul taking a deep breath...)... Good... The lungs are clear...
Paul: I have a question for you.
Doctor: Yup...?
Paul: Whose heart do I have?
Doctor: Aah... I cant tell you. Its hospital regulations. Just like the donors family
doesnt know your name either.
Paul: But you know?
Doctor: Yes. This is your heart now... Thats all it should matter to you.
Paul: I want to know who saved my life.
Nurse: If you want, you can send an anonymous letter to the family through the
donors association.
Mary: Personally, I think its better that you dont know.

QUESTIONS:
1. What ethical issues do you see in this case?
2. Why do you think they are ethical issues? What principles/norms/values are at
stake?











Buku Panduan Tutor Blok Bioethics And Health Law 4 11
SCRIPT - Fragment 3
Dokter: napas mendalam ... (Mengambil napas dalam-dalam Paul ...) ... Baik ...
Paru-paru yang jelas ...
Paul: Saya punya pertanyaan untuk Anda.
Dokter: Yup ...?
Paul: siapa hati yang saya miliki?
Dokter: Aah ... Saya tidak bisa memberitahu Anda. Ini rumah sakit rglements.
Sama seperti keluarga donor Tidak Tahu Apa namamu.
Paul: Tapi kau tahu?
Dokter: Ya. Ini adalah hati Anda sekarang ... Itu saja yang penting bagi Anda
keharusan.
Paul: Saya ingin tahu Apakah Anda menyelamatkan hidup saya.
Perawat: Jika Anda ingin, Anda dapat mengirim surat anonim kepada keluarga
donor melalui asosiasi.
Mary: Secara pribadi, saya pikir lebih baik Anda tidak tahu itu.

PERTANYAAN:
1. Apa isu-isu etis yang Anda lihat dalam kasus ini?
2. Mengapa Anda berpikir Mereka adalah masalah etika? Prinsip-prinsip apa /
norma / nilai-nilai yang dipertaruhkan?
Buku Panduan Tutor Blok Bioethics And Health Law 4 12
SCENARIO 2 (SGD 2):

HeLa

Henrietta Lacks is a poor young black tobacco farmer from rural southern Virginia. She
is one of ten siblings, having five children of her own, and had six or seven years of
education. Henrietta had been having some pain for about a year, but had not done
anything until the pains got more severe. She had recent history of vaginal bleeding
(spotting on her underwear) and blood in urine. The local doctor advised her to go to
Hopkins, a university hospital that was the only major hospital in the area that would
treat black patients during that time. On February 1, 1951, Henrietta went to Johns
Hopkins Hospital and signed a statement permitting any surgery deemed necessary.
She went through multiple tests, one which revealed a shiny purple lump on the cervix
about the size of a nickel. She was then diagnosed with cervical cancer.
Below is the operation permit which Henrietta had signed during her admission:


I hereby give consent to the staff of The Johns Hopkins Hospital to perform
any operative procedures and under any anaesthetic either local or
general that they may deem necessary in the proper surgical care and
treatment of:________________________.

Eight months later, despite surgery and radiation treatment, Henrietta died at age 31
as she lay in the hospital's separated ward for blacks. Not all of Henrietta Lacks died
that October morning, though. She left behind a piece of herself that still lives today.
As she lay on the operating table as part of the procedures, a sample of her cancerous
cervical tissue was taken without her knowledge or consent and given to Dr. Gey who
was conducting experiments in an attempt to create an immortal line of human cells
that could be used in medical research. Those cells, he hoped, would allow scientists
to unlock the mysteries of cancer, and eventually lead to a cure for the disease.
The cells, called HeLa, became one of the most important tools in medical research.
It has continually been used for research into cancer, developing the polio vaccine,
cloning, gene mapping, AIDS, effects of radiation and toxic substances, and countless
others. But Henrietta Lacks, the person who was the source of these cells, was
virtually unknown, and her family was never informed about what had been achieved
using her cells. Although their mothers cells have been bought and sold by the
billions, the Lacks family has received nothing from those cell lines, and cannot even
afford health insurance today.
Dr. George Gey, knew HeLa's origins, but he believed confidentiality was paramount--
so for years, Henrietta's family didn't know her cells still lived, much less how
important they had become. After Gey died in 1970, the secret came out. But it was
not until 1975, that Lacks' descendants came to understand her critical role in medical
research.
(Summaries from The Immortal Life of Henrietta Lacks, a book by Rebecca Skloot)
Buku Panduan Tutor Blok Bioethics And Health Law 4 13
Questions:
1. What ethical issues do you see in Henriettas case?
2. Do you think separating wards for a certain group of patients, without medical
indication (1st, 2nd, 3rd class, etc.), is considered as discrimination? Why or why
not?
3. How would you feel if you discovered that researchers had taken your cells or
tissues without consent?
4. Read the Operation Permit that Henrietta signed.
I hereby give consent to the staff of The Johns Hopkins Hospital to
perform any operative procedures and under any anesthetic either local
or general that they may deem necessary in the proper surgical care and
treatment of:________________________.

a. Do you think Henrietta was able to understand what she was signing?
b. Do you think it gave the hospital the right to take tissue from Henrietta for
research purposes? Why or why not? Is there any lack of information?
c. Have you had any experience signing, representing, or witnessing the process of
informed consent in a clinic or hospital? How do you see the information and
consent form in healthcare institutions in your place?

5. Should Gey and his colleagues have informed the Lacks family about the origins of
HeLa? Why or why not?
6. If you were Henrietta herself, would you want people to know about the origins of
the HeLa cells?
7. Do you think that Johns Hopkins should be penalized or required to reimburse the
Lacks family for using Henrietta Lacks tissue samples to develop and distribute
HeLa?
8. Do you agree with the assertion that people are morally obligated to allow tissues
taken during medical and diagnostic procedures to be used for research that could
potentially help others?
9. Should individuals receive financial compensation if their tissues are employed to
develop a biological product, or should that go to the person who developed the
product? How is this different with organ donation where selling/buying is illegal?
10. What do you think of the status of diseased tissue which has been removed from the
patients body ? Do you think it still belongs to the patient ?













Buku Panduan Tutor Blok Bioethics And Health Law 4 14



Buku Panduan Tutor Blok Bioethics And Health Law 4 15
MATERI KULIAH DAN PENGAJAR

NO MATERI KULIAH PENGAJAR
1. Ethics in Reproductive Health and Technology Dr. Aditiyono, SpOG
2. Abortion Dr. Hendro Budi H., SpOG
3. Organ Donation Drs. Uki Dwiputranto, Grad.Dip.Sc., M.Sc.
4. Ethics and Genetics Dr. Lantip Rujito, MSi.Med.
5. Genetic Testing Dr. Lantip Rujito, MSi.Med.
6. Film Review Dr. Amalia Muhaimin, M.Sc.

JADWAL DISKUSI






NO HARI TGL JAM KETERANGAN
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