Transcript Draft Social Statement on Genetics to be considered by the

Draft Social Statement
on Genetics: Resource
Florida Bahamas Synod Resource Group
Summer 2010
1
Resource for Further Discussion
• Includes background ethical guidelines/
concerns, theological explorations, and
scientific information
• Presents some highlights from the social
statement relative to these topics
2
Suggestion on how to use this
resource
• Draft Social Statement (page numbers in
red, text red boxes)
• Read the Social Statement and other
related statements
• Pray, reflect and meditate on the material
• Create a safe place by encouraging
freedom of expression
• Discuss material honestly but respectfully
3
Goal of the Resource Group
• Receive feedback from congregations
• Feedback to Resource Group depends on
structured discussions
• Intention is to increase awareness of
genetic innovation and its influence on
society
• Stress the importance of discussing (as
Lutheran Christians) controversial topics
4
Genetics Made Simple
• In the nucleus of all of our cells is DNA
• The language of the DNA is the genetic
code
• This DNA makes proteins and directs the
cell to be a liver cell, a skin cell, a brain
cell, etc.
5
Genetics Made Simple (cont.)
• The genetic code is the same in plants,
bacteria and all animals
• That is why some medicines (growth
hormones, insulin) can be made in
bacteria or plants and work on us
• What happens when there is a change in
the DNA?
• This is a mutation
• Mutations can be either good or bad
6
Genetic Mutation, Eg. 1
• Sickle cell anemia is caused mutation(s) in blood
cells
• disease needs mutant gene from both parents
• For protection from malaria, need mutant gene from
one parent
• Athletes are affected:
• Sickle cell trait can change the shape of red blood cells during
intense or extensive exertion, causing a blockage in blood
vessels and rapid breakdown of muscles, including the heart
• NCAA Protocol for sickle cell testing (Apr 13, 2010)
The Division I Legislative Council decided that all incoming
Division I student-athletes must be tested for sickle cell trait
http://www.wwwncaa.com/wps/portal/ncaahome?WCM_GLOBAL_CONTEXT=/ncaa/ncaa/ncaa+news/ncaa+news+online/2
010/division+i/protocol+decided+for+sickle+cell+testing_04_13_10_ncaa_news
7
Genetic Mutation, Eg. 2
• Introduction (p. 2)
Justin and Hannah are distraught about the choices they need to make. Their little
boy, Jason, has been diagnosed with a type of severe immune deficiency that will
dramatically shorten his life. The deficiency can now be treated through bone
marrow transplant as a form of gene therapy, but this requires a matching donor
and is expensive and risky. They have tried to fid a bone marrow match without
success. Justin and Hannah have wished for another child and realize that, if they
conceive again, their second child could offer the surest means to fit the needed
match for Jason.
“We don’t know if we should use pre-implantation genetic diagnosis (PGD)*. Would
we select only embryos that are a perfect bone marrow match for Jason? What
would happen to the embryos that didn’t match? Do we select the procedure even
though we would need to come up with money that we don’t have? Having a
regular pregnancy and then doing prenatal diagnosis would cost less. But we can’t
do prenatal diagnosis until we are already pregnant and we would have to decide if
we could actually stop a pregnancy that wasn’t a bone marrow match. We just don’t
know if we should leave it all in God’s hands and accept that Jason is with us for
only a short time.”
8
Genetic Mutation, Eg. 2
• Introduction (p. 2)
*Pre-implantation genetic diagnosis (PGD): A procedure used to decrease the
chance of a particular genetic condition for which the fetus is specifically at risk by
testing one cell removed from early embryos conceived by in vitro fertilization and
transferring to the mother’s uterus only those embryos determined not to have
inherited the mutation in question.
9
Genetic Mutation, Eg. 2
• Child has severe immune deficiency
(mutation)
• If there is a compatible donor, a bone
marrow transplant can be made for
correction.
• Often a brother or sister is best match.
• If there is already a sibling who is a good
match, great, BUT, what if there is not?
• Have another child to have a match?
• Moral problem as using someone as an ends
10
Genetic Mutation, Eg. 3
Example from Genetics! Where Do We Stand as Christians?
As genetic screening increases, so will the number of
families who have to make difficult decisions about whether
to terminate a pregnancy.
11
PART I
INTRODUCTION
12
Introduction (Page 2)
• Advances in genetic knowledge illustrate
the abundant gifts of God’s creation
• Break-through discoveries and cuttingedge technologies evoke a sense of
wonder and provide insights into the
human place within the web of creation
• They unlock unprecedented power to
diagnose and cure diseases and to address
agricultural and environmental problems
13
Examples of Ground Breaking
Technologies (Page 12)
• Genetic engineering in agriculture:
(biotechnology), including genetically
engineering seeds or cloning plants and
animals, and “pharming”
• Molecular medicine: including stem cell
research, genetic therapy, personal
genomics & SNP mapping, as well as
efforts to extend the longevity of human
life
14
Examples of Ground Breaking
Technologies (cont.)
• Procreative activities: including prenatal
testing and screening, genetically aided
assisted reproductive technologies (ART),
pre-implantation genetic diagnoses (PGD),
and the artificial creation of new life forms
(synthetic biology)
• Commercial delivery: including DNA
testing for employment & health
insurance, trade policies, patenting of
genetic material and research processes
15
Examples of Ground Breaking
Technologies (cont.)
• Social use or implications: such as in
criminology and DNA evidence
16
PART II
ETHICAL CONCERNS
17
Ethical Framework (pp. 16-34)
1) Emphasis on respect of life
2) Promotion of the well being of the community of
life
3) Emphasis on justice and wisdom
4) Promote common good through innovation
(Foot note 23 bellow)
23 Throughout history, human activity has lead to novel and
innovative contributions to the scope of the natural order.
The existence of dogs illustrates this point; they exist only
because of human efforts. Wolves and coyotes would exist
in nature without the human species, but dogs would not.
18
5) Justice entails:
• Sufficiency
• Sustainability (pp. 25-26)
• Solidarity (p. 27-30)
• Participation
6) Approach concerns with wisdom:
• The knowledge of specialists
• Humility
• Precautionary principle
7) Never lose sight of convictions (p. 32-34)
19
How might we evaluate
developments in science
Sufficient
Sufficiency means that we assess economic activities in terms
of how they provide "adequate access to income and other
resources that enable people to meet their basic needs,
including nutrition, personal development, and participation
in community with dignity" (SSLA p. 10.4). This includes
attention to justice and human dignity in all economic policy
and practice (SSLA p. 9.4&5). Sufficiency means, as well, that
we seek to meet the basic needs of all creation by stewarding
arable land and changing patterns of acquisition and
consumption (CC p. 7.3-5).
20
How might we evaluate
developments in science
Sustainable
Sustainability means that we support practices to protect and
enhance the capacity of natural and social systems to survive
and thrive together over the long term, including respect of
environmental limits. Sustainability means, as well, “providing
for an acceptable quality of life for present generations
without compromising resources for future generations.” This
entails the protection of species and the fostering of behavior
consistent with long-term sustainability (CC p. 8.3).
21
How might we evaluate
developments in science
Livelihood
"Livelihood" designates here the means of subsistence,
including the economic arrangements and infrastructures
necessary for supporting it (SSLA p. 7.3). As stewards of this gift
of livelihood, we are to support practices that use available
resources to generate jobs and the creation of capital for growth
required to meet basic needs so that lives may be lived
beneficially and productively (SSLA p. 8.4).
22
How might we evaluate
developments in science
For all
"For all" means that economic activities should be assessed in
terms of how they affect "all people," especially those living in
poverty (SSLA p. 4.3).
23
How might we evaluate
developments in science
Stewardship
Stewardship means that all our efforts serve the best interests
of creation's integrity in imitation of God's care for us (CC p.
3.2).
http://www.elca.org/What-We-Believe/Social-Issues/Social-Statements-inProcess/Genetics/Studies/GMOs.aspx
24
How might we evaluate
developments in science
Justice
Justice for the relationships within creation means "honoring the integrity of
creation, and striving for fairness within the human family" (CC p. 6.2). It
entails honoring the principles of participation, solidarity, sufficiency, and
sustainability. Participation requires that all living things "are entitled to be
heard and to have their interests considered when decisions are made" (CC
p. 6.4) with a special hearing from those who work closest to the land and
living things (CC p. 6.5). The principle of participation entails, as well, that
“we are to participate actively in decisions that impact our lives” (SSLA p.
9.6). Solidarity requires that human beings stand together in
interdependence to act locally and globally on behalf of creation (CC p. 6.9).
25
PART III
THEOLOGICAL CONCERNS
26
Challenges for a Community in
Christ (pp. 34-40)
1) The emerging context for Christian communities
2) Koinonia (p. 36)
3) Leadership
4) A public church
5) A community of redeemed decision-makers
27
PART IV
SCIENTIFIC DEVELOPMENTS
28
Three topics explored
in the draft:
(Suggested ideas for discussion)
• Genetic Manipulation of Plants & Animals
• Stem Cell Research
• Genetic Testing
29
A. Genetic Engineering in
Agriculture
Biotechnology includes:
• genetically engineering seeds
• Genetic manipulation of food
• cloning plants & animals
• “pharming” or engineering human
proteins in animal milk to produce
medicinally valuable proteins in said milk
30
Prof. William Rodriquez
Bethune Cookman University
Bioethics Lecture
31
Genetic Engineering in
Agriculture
Pros
Cons
• Increased food
production to
ameliorate world
hunger
• Specifically tailor
meds and vaccines
to patients
• Playing with
nature
• Unintended
consequences
• Will this tech be
available to all or
just the affluent?
32
3.3 The global context of genetic developments page 13
The first is perhaps most commonly recognized: all societies
on earth are ever more closely being interconnected. The
decision whether to use genetically modified seed affects
not only the contents of U.S. breakfast cereal but also what
kind of seeds become available for African farmers. There are
virtually no isolated choices or activities that affect only one
section of the global village. Decisions, rather, are like the
ripples spreading across a small pond—their effect is seen
everywhere.
33
3.3 The global context of genetic developments page 13
Many resource-poor countries, for instance, have critical
needs that do not require genetic solutions. These include
infrastructure, food distribution, clean water, housing and
basic health care. 18
Voices from within the Lutheran communion, from foreign
leaders and from others around the world point out that
genetic research and technology may therefore have a
negative impact on the availability of international aid or
research for addressing these critical needs.
34
Genetically Modified Organisms
in the Food Supply
• Biotechnology bears the potential both for substantial good and
permanent harm. The manipulation of genetic material (DNA) in
seeds, for instance, has sometimes prevented crop disaster or
increased crop productivity, reduced chemical input, and lowered
production costs. At the same time, the use of GMOs (Genetically
Modified Organisms)has led to disputes about food safety, food
security, food sovereignty, economic development, trade
implications, and ecological integrity.
• Genetically modified organisms refer to microbes, plants, and nonhuman animals that have been manipulated at the genetic level by
means of biotechnology (recombinant DNA technology).2
http://www.elca.org/What-We-Believe/Social-Issues/SocialStatements-in-Process/Genetics/Studies/GMOs.aspx
35
Are GMO’s good or bad?
• Inconclusive and complex
Evidence from the physical and social sciences does not settle the
question of how harmful or beneficial GMOs are. The following
points may illustrate the extent of the complex character of GMO
evaluation:
Some individuals and organizations hold that GMOs simply extend
the ages-old manipulation of nature as represented by the
traditional breeding of species. Others point out that GMOs
represent unprecedented manipulation by enabling novel
combinations of genetic material across the boundaries of species
or kingdoms
36
http://www.elca.org/What-We-Believe/Social-Issues/Social-Statements-in-Process/Genetics/Studies/GMOs.aspx
Genetic Engineering in Film
Something to think about:
Consider concerns in the following films
• Jurassic Park (1993)
• I Am Legend (2007)
• Resident Evil (2002)
• Plague (1978)
37
B. Molecular Medicine
Molecular Medicine includes:
• Practices involving stem cell research
• Personal genomics
• Genetic (SNP) mapping
• Efforts to extend the longevity of human
life
38
B. Molecular medicine
• Cure Cancer. This seems to be good, but the science used for this
also is used for all sorts of other applications. This treatment may
cost a lot of money, should it be available to all? Should it be
covered by all health insurance plans? What about those without
health insurance, and in countries without adequate health
insurance?
• Stem cells.
• Human Cloning. Did you ever see the movie The 6th Day, or The
Island ?
39
Molecular Medicine
Pros
Cons
• Cure diseases such
as cancer
• Specifically tailor
meds and vaccines
to patients
• Ameliorate organ
shortage
• Prohibitive cost
• Who should have
access?
• What conditions?
• Medical rationing
necessary
• Infant or adult
stem cells?
• Human Cloning
40
Prof. William Rodriquez
Bethune Cookman University
Bioethics Lecture
41
42
Prof. William Rodriquez
Bethune Cookman University
Bioethics Lecture
Prof. William Rodriquez
Bethune Cookman University
Bioethics Lecture
43
Solidarity Page 28 Solidarity also bears on the contested issue
of human embryonic stem cell research and presents a case in
which there are competing claims following from the same
principle.
Many in this society and this church believe that the practice of
regenerative medicine (based upon stem cell research) could
benefit millions of people whose lives are burdened, if not
threatened, by a host of serious diseases. Others in this society
and this church believe, however, that only those forms of stem
cell research should be pursued that do not require the
destruction of viable human embryos. They argue that embryos
be regarded as the weakest and most vulnerable of the human
community and that their existence is worthy of respect and
protection.
44
Page 29 Solidarity In the meantime, it accepts
the use of surplus frozen embryos that were
created for infertility treatment but are no
longer needed. Since they are unlikely to be
implanted and will ultimately be discarded, it
seems preferable that they be used in research
that may be beneficial to millions of humans
and future generations.
45
Page 26 Solidarity
This church’s respect for the “value, worth, and
dignity” of human embryonic life precludes the
creation of embryos expressly for research purposes.
Commercial development (“embryo farming”) is
incompatible with this church’s understanding of the
value of life. At the same time, this church cannot be
indifferent to the suffering of patients who await the
therapeutic potential of regenerative medicine. It
welcomes scientific research aimed at finding
alternative sources of pluripotent stem cells that do
not involve the use of embryonic human life.
46
IV An Ethical Framework 4.3 Respect Page 19
Respect is a directive grounded in the dignity and integrity of created life. For
Lutheran Christians, this respect follows from God’s creative activity and God’s
regard for all life as precious, from the amoeba to the person. Human beings
cannot love as God does, but the minimal response to other members of the
community of life is to recognize their givenness and integrity.
Page 21 Likewise, the reproductive cloning of human
individuals is rejected. Currently, attempts to clone a human
being represent unacceptable experimentation. Even if that
obstacle were overcome, however, the decision to clone a
complete genetic replica of a human being violates the principle
of respect for the individual who is brought into existence. No
individual should be brought into life for the sake of repeating
another individual’s genotype.
47
Page 21
This church acknowledges some tragic circumstances where
reproductive cloning, if it were safe, may not be motivated by a
selfish or narcissistic end. However, we stand with the faith
claim that to be human is to be mortal and believe we should
not seek to circumvent mortality through reproductive cloning.
Should reproductive cloning progress, this church would honor
the God-given dignity of cloned individuals and would welcome
each to the baptismal font like any other child of God.
48
Prof. William Rodriquez
Bethune Cookman University
Bioethics Lecture
49
Procreative activities,
• including prenatal testing and screening, genetically aided assisted
reproductive technologies (ART), pre-implantation genetic diagnoses
(PGD), and the artificial creation of new life forms (synthetic biology).
• In the future we will be able to correct genetic diseases (pre and post natal,
as well as in adults). There may be profound ethical choices as this research
continues. Is this a form of eugenics? How long should life continue, and at
what financial cost? Should this only be available to the affluent?
• We need to be able to talk to our children and grandchildren. They may be
faced with ethical decisions that we never thought of. For example, they
may be told that the fetus she is carrying has a dreaded disease? Who can
they talk to as they decide the emotional impact of terminating the
pregnancy, versus caring for a genetically damaged child for life? What
about the financial impact on them, or society? Can we put a dollar value on
life? Where will the millions of dollars come from to care for this child?
What will be the emotional impact on the rest of the family?
50
Molecular Medicine in the news
• Stem cell news:
http://www.celltherapynews.com/
• Adult stem cell breakthrough:
http://www.mercurynews.com/california/ci_
15682099?nclick_check=1
• Inter species mixing:
http://www.msnbc.msn.com/id/7681252/
• The business of Stem Cell Therapy:
http://www.medra.com/
• Artificial life created:
http://www.npr.org/templates/story/story.ph
p?storyId=127010591
51
Molecular Medicine in Film
Something to think about:
Consider concerns in the following films
• Gattaca (1997)
• Andromeda Strain (1971)
• Outbreak (1995)
• TV: Gene Roddenberry’s Andromeda
(2000-2005), Dark Angel (2000-2002)
52
C. Genetic Testing
Pros
• Prenatal
screening
• Early disease
detection
• Screening for
hereditary
conditions
Cons
• Genetic profiling
• Genetic
discrimination
• Abuse by
employers, health
& life insurance
companies
53
Prof. William Rodriquez
Bethune Cookman
University
Bioethics Lecture
54
Page 21
This church rejects the “technological
imperative,” that is, it rejects the prevalent
practice or belief that we are free to use any
knowledge that becomes available to create
any technological application if the market will
support it. An economic approach that
promotes the unfettered pursuit of self-interest
carries little or no basic respect for the needs of
participants in the community of life.
55
Sustainability Page 25
In regulating new products and processes, government
regulators and policy makers have historically relied on
three standard criteria:
(1) human risk and safety,
(2) immediate animal and environmental risk and safety,
and
(3) technological efficacy.
We applaud these criteria and urge their continued,
consistent and reasonable application.
56
Is the below concept “new” to social statements?
Sustainability page 26 The ELCA calls for the
implementation of an additional criterion long-term,
ecological, social and economic impact in
assessment of relevant genetic processes and
products. The implementation of this criterion would
introduce novel features into the current regulatory
process and could slow development. Its inclusion in
models of risk assessment and regulation, therefore,
must be judicious; its inclusion, however, is justified
by two prominent concerns.
57
Is the below concept “new” to social statements?
Sustainability page 26
First, the use of genetic knowledge, like all
technological application, will have both
unanticipated and unintended consequences and
these will have long-term impact on the biosphere
and future generations. Second, genetic knowledge
and the applications it produces will have long-term
social impact. The addition of long-term, ecological,
social and economic impact assessment and
regulatory processes would implement needed
attention to these critical concerns.
58
5.2 Koinonia pages 35-36
As places of koinonia, congregations and other ministry sites
today are called to live into an identity in which all suffer in
common when one suffers and all rejoice when one rejoices (1
Corinthians 12:1–26; Romans 12:15; Philippians 2:1–4). Learning
that there is a genetic source or a possible human intervention
will bring relief and joy for some people. For others, learning that
there is a genetic source or a failed human intervention will bring
greater anguish and a sense of futility. Some individuals will be
able to take advantage of genetic advances and others will not.
Some will choose not to do so. As followers of Christ,
congregations are called to compassion in each case.
59
Pages –32–34 list what is accepted, rejected, and questioned
4.7 Convictions
The imperative to respect and promote the community of life
with justice and wisdom does not provide a practical program
of rules or answers for complex and challenging questions. As a
framework for faith active in love seeking justice, it serves to
guide thoughtful deliberation, creative choices, sound
advocacy, wise practices, and just decisions over the long haul.
At the same time it allows this church to identify general
convictions that seem justified and prudent.
The ELCA calls upon individuals, agencies, organizations,
corporations and governments to pursue goals and to set
policies that will:
Use for minimum discussion
60
PART V
SUPPLEMENTAL INFORMATION
61
Select Bibliography
• Pence, Gregory E. ed. 2007. Classic Cases in
Medical Ethics, McGraw-Hill.
• Kuhse, Helga and Singer, Peter eds. 1998. A
Companion to Bioethics, Blackwell.
• Burley, Justine and Harris, John eds. 2004. A
Companion to Genethics, Blackwell.
• Beauchamp, Tom L. and Childress, James F. 2001.
Principles of Biomedical Ethics, 5th ed., Oxford
University Press.
• Beauchamp and Walters, eds. 2003. Contemporary
Issues in Bioethics, 6th edition, Wadsworth.
62
Select Bibliography
• Mappes, Thomas and De Grazia, David, 6th
edition, 2010, Biomedical Ethics. McGraw Hill.
• Marty, Martin, 1983. Health and Medicine in
Lutheran Tradition: Being Well. Crossroads
Publishing Co.
• Rothman, David J., 1992. Strangers at the
Bedside: A History of How Law and Bioethics
Transformed Medical Decision Making. Basic
Books.
• The President’s Council on Bioethics.
www.bioethics.gov
63