Bioethics for Informed Citizens across Cultures

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Bioethics
for
Informed Citizens
across Cultures







Darryl R.J. Macer, Ph.D.

(Editor)



Eubios Ethics Institute 2004

(revised on
-
line version April 2005)


ii

Bioethics for Informed Citizens across Cultures

© Eubios Ethics
Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


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Bangkok

Christchurch

Tsukuba Science City

The Eubios Ethics Institute is

a non
-
profit group that aims to stimulate the
discussion of ethical issues, and how we may use new technology in ways
consistent with "good life". An important part of this dialogue is to function
as an information source for those with similar concerns.
Other publications
are listed at the end of this book. The views expressed in this book do not
necessarily represent the views of the Eubios Ethics Institute.


Copyright © 2004 Eubios Ethics Institute

All rights reserved. The copyright for the complete pub
lication is held by the Eubios Ethics Institute. No part of
this publication may be reproduced except for personal use, and non
-
profit educational use, without the prior
written permission of the Eubios Ethics Institute.


Cataloging
-
in
-
Publication data

Bio
ethics
for Informed Citizens across Cultures

/ editor, Darryl R.J. Macer.

Christchurch, N.Z. : Eubios Ethics Institute
©
2004.



1 v.

Forty one papers.

vi +154 pp.

ISBN 0
-
908897
-
20
-
0


1. Bioethics. 2. Medical ethics 3. Environmental Ethics 4. Bioethics Edu
cation I. Macer, Darryl R.J. (Darryl
Raymund Johnson), 1962
-

IV. Eubios Ethics Institute. V. Title (
Bioethics
for Informed Citizens across Cultures
).



Key Words: Asia, Biodiversity, Bioethics, Bioethics Education, Biotechnology, Environment, Eugenics, Gen
etic
Counseling, Genetic Engineering, Genetic Screening, Genetic Therapy, Human Genetic Disease, Human Genome
Project (Scientific, Ethical, Social and Legal Aspects), Medical Ethics, Medical Genetics (Diagnosis, Treatment
and Prevention), Patenting of Life
, Reproductive Technology.


On
-
line version

Project site
<
http://www.unescobkk.org/index.php?id=2508
>

Note that a second edition of this book with revisions and extra material is intended to be published in
mid
-
2005. The views in this book should not be t
aken to be the views of UNESCO.


Further copies can be obtained from the Eubios Ethics Institute. For teachers involved in the Bioethics
Education Project (open to all), this book is free. For others contributions are appreciated by cheque, or bank or
post
al order, or VISA or MASTERCARD for the following amounts (
includes post
);

US $20 Euro 15

UK £10 NZ $30 A$33 C$33 ¥ 2000

payable to the "Eubios Ethics Institute";

c/o
Darryl Macer, Ph.D.,

Regional Advisor in Social and Human Sciences for Asia and the Paci
fic,

Regional Unit for Social and Human Sciences in Asia and the Pacific (RUSHSAP),

UNESCO Bangkok,

920 Sukhumvit Road, Prakanong, Bangkok 10110, THAILAND

Tel: +66
-
2
-
391
-
0577 ext 141

Fax: +66
-
2
-
664
-
3772

Email: d.macer@unescobkk.org




Bioethics for Informed Citizens across Cultures

iii


© Eubios Ethics Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


Preface

Bioethics
could be defined as the study of ethical

issues and decision
-
making
associated with the use of living organisms.
Bioethics

includes both medical ethics and
environmental ethics. Bioethics is learning how to balance different benefits, risks and
duties. Con
cept
s of bioethics can

be seen in literature, art, music, culture, philosophy,

and religion
, through history
.

In order to have a sustainable future, we need to promote bioethical maturity. We
could call the bioethical maturity of a society the ability to b
alance the benefits and risks
of applications of biological or medical technology. It is also reflected in the extent to
which public views are incorporated into policy
-
making while respecting the duties of
society to ensure individual's informed choice. A
wareness of concerns and risks should be
maintained, and debated, for it may lessen the possibility of misuse of these technologies.
Other important ideals of bioethics such as autonomy and justice need to be protected
and included when balancing benefits
and risks.

Bioethics

is not about thinking that we can always find one correct solution to ethical
problems.
Ethical principles and issues need to be balanced. Many people already
attempt to do so unconsciously. The balance varies more between two persons

within any
one culture than between any two. A mature society is one that has developed some of the
social and behavioural tools to balance these bioethical principles, and apply them to new
situations raised by technology.



The objectives of this book (
and on
-
line resources and the teaching pack on the
Eubios CD/DVD) are to provide a free on
-
line resource teachers and students can use to
learn about bioethics, and think more widely about life. A variety of styles are used, and
we would like feedback from

teachers, students, anyone who wishes to give it.

List serves have been set up in English and Japanese, and home pages also in both
languages. Everyone is welcome to join

Internet site <
http://www.unescobkk.org/index.php?id=2508
>

listserve <http://groups
.yahoo.com/group/Bioethicseducation/>

Student listserve
<Bioethics_for_students@yahoogroups.com>


This project aims to produce free on
-
line teaching materials for bioethics
education in different countries. The main products will be: 1) Materials for teac
hing
bioethics; 2) A textbook that could be used in school and university classes to teach about
iv

Bioethics for Informed Citizens across Cultures

© Eubios Ethics
Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


bioethical issues; and 3) A network of teachers in different countries.

There has been consensus among those involved that we can measure the success of
bioeth
ics education in several ways. Some goals of bioethics include: 1) Increasing respect
for life; 2) Balancing benefits and risks of Science and Technology; 3) Understanding better
the diversity of views of different persons. We do not need to achieve all th
ree goals to
consider education to be successful, and different teachers and institutions put a different
amount of emphasis on each goal.


This book has pages for students at many levels of learning, and for teachers. If
English language is a problem ple
ase access the on
-
line site for a growing list of chapters
and teaching materials and resources in different languages (currently, Japanese, Spanish,
Chinese and Tamil). Chapters are available in three forms: 1) Full form, 4
-
6 pages
(included). 2) Short fo
rm, 1
-
2 pages (not included in this book). 3) Bioethics topics page by
page (included). It is suggested that teachers select the appropriate length of text (from the
one page versions and long versions) to give to students to read, but that students can re
ad
all the text if they have time and interest. The students can also read the teacher notes in
this book if they wish. The versions of chapters and materials that are on
-
line are in colour,
but this book is printed for economic reasons in monochrome.


Th
e Eubios Ethics Institute website has about 1800 files available for download,
including the UNESCO/IUBS/Eubios Living Bioethics Dictionary, and regular News
updates. Further copies of chapters and updates, teachers guides, evaluation sheets, etc.
are avai
lable upon request. We are also interested in assembling student projects and
different teachers' materials in a global site that all can use, and can inform us all. We
welcome improvement and additions to this project.


The limit to this project is only
the imagination of those involved.








Darryl Macer, Ph.D.








April, 2004

Bioethics for Informed Citizens across Cultures

v


© Eubios Ethics Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


Contents

Preface










iii

Authorship and Acknowledgments







vi

Bioethics page by page

Autonomy









1

Justice










2

Benefits versus risks








3

Animal right
s?









4

Intrinsic and extrinsic ethical factors over animal use





5

Genetic testing and privacy







6

Trash and Treasure Activity on Testing for cancer gene susceptibility



7

AIDS Testing









8

The Heart Transplant








9

Ethics and Driving

Cars








10

Ecotourism and ethics








11

Sustainable Development








12

Euthanasia









13

Telling the truth about terminal cancer






14

Genetic engineering and Food







15

Reproduction and Fertility








16

In Vitro

Fertilization (IVF)
Technology






17

Artificial insemination, Sperm, Egg and Embryo Donation




18

Surrogacy









19

Somatic Cell Gene Therapy







20

Germ
-
line gene therapy








21

Human cloning









22

Eugenics









23

SARS (Severe Acute Respiratory Syndrome)






24

Environmental Science








148


Movie Guides







on
-
line version

vi

Bioethics for Informed Citizens across Cultures

© Eubios Ethics
Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


Full chapters and Teaching Resources

1. Making choices, diversity and bioethics






25

2. Ethical limits of animal use







31

3. Genetic privacy and information






39

4.
Testing for cancer gene susceptibility






45

5. Gene therapy









49

6. Brain Death









57

7. Organ donation








63

Play script for Role Play on Brain Death and Organ Donation




68

8. Lifestyle and Fertility








73

9. Assisted reprod
uction









81

10. Genetically modified foods/Ethics of Genetic Engineering




92

11. Telling the truth about terminal cancer






98

12. Euthanasia









104

13. AIDS and Ethics








111

14. Sustainable Development







118

15. Cars and the Et
hics of Costs and Benefits





133

16. Ecotourism









140


Feedback Forms and Information







149

Bioethics for Informed Citizens across Cultures

vii


© Eubios Ethics Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


Authorship and Acknowledgments


The chapters in this book have been written by several authors and edited by Darryl
Macer. Additional thanks for edit
ing goes to Mary Ann Chen Ng, and many teachers and
project country coordinators in different countries. In particular thanks to
Wil Van Rooy for
constructive comments on design of chapters. Thanks also to Fumi Maekawa, Mihaela
Serbulea and Nobuko Macer f
or essential help with the project.

With appreciation to those who attended the working meetings 12
-
16th February 2004 in
Tsukuba at the time of the Ninth Tsukuba International Bioethics Roundtable (TRT9) and the Fifth
Asian Bioethics Conference (ABC5), w
hich saw the formation of the International Bioethics
Education Network. The human network is another product of the project, essential for
implementation and expansion of bioethics education. The papers and visual aids of that meeting
are available on the

Internet site and Eubios CD, with thanks to Richard Clark for translation of
visual aids between Japanese and English.

I also thank the staff and students of Ateneo de Manila High School, The Middle School
attached to Beijing Normal University, for specia
l enthusiasm in the first year of trials of this
project, as well as all other schools and universities in which trials were conducted. Thanks
especially to the country and regional coordinators which for 2003 were
Australia (Irina Pollard),
China (Baoqi S
u), India (Jayapaul Azariah), Japan (Fumi Maekawa), Mexico (Marcela
Rodriguez), New Zealand (Lindsey Conner, Darryl Macer), the Philippines (MaryAnn Chen Ng,
Ester Abito), Taiwan (Dena Hsin; Beryl Lee). Their enthusiasm has also inspired the project to
exp
and to countries including Korea, Nepal and Poland in the coming year, and we hope to more
countries soon.
We also thank the essential financial support of Sasakawa Peace Foundation for
the project 2003
-
2004, and the staff including program officer Naotaka

Oh for flexibility in
optimizing the productivity of the project. There was also supplementary support from a Grant for
Scientific Research from the Japanese Ministry of Education, Science, Sports and Culture.

The authors of the chapters include Darryl Ma
cer (Autonomy, Justice, Benefits versus
risks, Animal rights, Intrinsic and extrinsic ethical factors over animal use, Somatic Cell Gene
Therapy, Germ
-
line gene therapy, Human cloning, Eugenics, SARS (Severe Acute Respiratory
Syndrome), Making choices, div
ersity and bioethics, Ethical limits of animal use, Gene
therapy), Baoqi Su (Genetic testing and privacy, Genetic privacy and information), Lindsey
Conner (Trash and Treasure Activity on Testing for cancer gene susceptibility, Testing for
cancer gene susce
ptibility), Fumi Maekawa (AIDS Testing), Mitsuo Saitoh (The Heart
Transplant), Rick Weisburd (Ethics and Driving Cars, Cars and the Ethics of Costs and
viii

Bioethics for Informed Citizens across Cultures

© Eubios Ethics
Institute 2005
Bioethics for Informed Citizens across Cultures

<

http://www.unescobkk.org/index.php?id=2508
>


Benefits), Mary Ann Chen Ng (Ecotourism and ethics, Ecotourism), Morgan Pollard
(Sustainable Development
), Margaret Sleebom, Rok Lampe (Euthanasia), Dena Hsin
-
Chen
Hsin (Telling the truth about terminal cancer), Minakshi Bhardwaj (Genetic engineering and
Food, Genetically modified foods/Ethics of Genetic Engineering), Irina Pollard (Reproduction
and Fertilit
y, In Vitro Fertilization (IVF) Technology, Artificial insemination, Sperm, Egg and
Embryo Donation, Surrogacy, Lifestyle and Fertility, Assisted Reproduction), and Alireza
Bagheri (Brain Death, Organ donation).

We welcome more! Updates will be posted on
the listserve and placed on the web site to
download as MS Word files as soon as they are available.