Draft Social Statement on Genetics: Resource Florida Bahamas Synod Resource Group Summer 2010 1

Draft Social Statement on Genetics: Resource

Florida Bahamas Synod Resource GroupSummer 2010

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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

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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.

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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

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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

7http://www.wwwncaa.com/wps/portal/ncaahome?WCM_GLOBAL_CONTEXT=/ncaa/ncaa/ncaa+news/ncaa+news+online/2010/division+i/protocol+decided+for+sickle+cell+testing_04_13_10_ncaa_news

Genetic Mutation, Eg. 2 • Introduction (p. 2)

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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.”

Genetic Mutation, Eg. 2 • Introduction (p. 2)

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*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.

Genetic Mutation, Eg. 2

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• 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

Genetic Mutation, Eg. 3

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As genetic screening increases, so will the number of families who have to make difficult decisions about whether to terminate a pregnancy.

Example from Genetics! Where Do We Stand as Christians?

PART I INTRODUCTION

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Introduction (Page 2)

• Advances in genetic knowledge illustrate the abundant gifts of God’s creation • Break-through discoveries and cutting-

edge 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

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Examples of Ground Breaking Technologies (cont.)

• Social use or implications: such as in criminology and DNA evidence

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PART IIETHICAL CONCERNS

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Ethical Framework (pp. 16-34)

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1) Emphasis on respect of life 2) Promotion of the well being of the community of life 3) Emphasis on justice and wisdom4) 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.

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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)

How might we evaluate developments in science

SufficientSufficiency 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


SustainableSustainability 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).

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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 giftof livelihood, we are to support practices that use available resources to generate jobs and the creation of capital for growthrequired to meet basic needs so that lives may be lived beneficially and productively (SSLA p. 8.4).

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For all"For all" means that economic activities should be assessed in terms of how they affect "all people," especially those living inpoverty (SSLA p. 4.3).

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StewardshipStewardship means that all our efforts serve the best interestsof creation's integrity in imitation of God's care for us (CC p.3.2).

24http://www.elca.org/What-We-Believe/Social-Issues/Social-Statements-in-Process/Genetics/Studies/GMOs.aspx


JusticeJustice 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, andsustainability. 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).

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PART IIITHEOLOGICAL CONCERNS

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Challenges for a Community in Christ (pp. 34-40)

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1) The emerging context for Christian communities2) Koinonia (p. 36)3) Leadership4) A public church5) A community of redeemed decision-makers

PART IVSCIENTIFIC DEVELOPMENTS

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Three topics explored in the draft:

(Suggested ideas for discussion)• Genetic Manipulation of Plants & Animals• Stem Cell Research • Genetic Testing

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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

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Prof. William RodriquezBethune Cookman University Bioethics Lecture

Genetic Engineering in Agriculture

Pros• Increased food

production to ameliorate world hunger• Specifically tailor

meds and vaccines to patients

Cons• Playing with

nature• Unintended

consequences•Will this tech be

available to all or just the affluent?

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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.

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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.

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 non-

human animals that have been manipulated at the genetic level by means of biotechnology (recombinant DNA technology).2

35http://www.elca.org/What-We-Believe/Social-Issues/Social-Statements-in-Process/Genetics/Studies/GMOs.aspx

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

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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)

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B. Molecular Medicine

Molecular Medicine includes:• Practices involving stem cell research• Personal genomics • Genetic (SNP) mapping• Efforts to extend the longevity of human

life

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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 ?

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Molecular Medicine

Pros• Cure diseases such

as cancer• Specifically tailor

meds and vaccines to patients• Ameliorate organ

shortage

Cons• Prohibitive cost •Who should have

access?•What conditions?•Medical rationing

necessary• Infant or adult stem

cells?• Human Cloning

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42Prof. William RodriquezBethune Cookman University Bioethics Lecture

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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.

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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.

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Page 26 SolidarityThis 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.

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IV An Ethical Framework 4.3 Respect Page 19Respect 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.

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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.

49Prof. William RodriquezBethune Cookman University Bioethics Lecture

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.php?storyId=127010591

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http://www.celltherapynews.com/

http://www.celltherapynews.com/

http://www.mercurynews.com/california/ci_15682099?nclick_check=1



http://www.msnbc.msn.com/id/7681252/



http://www.medra.com/

http://www.medra.com/

http://www.npr.org/templates/story/story.php?storyId=127010591



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

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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.

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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.

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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.

Is the below concept “new” to social statements?

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Sustainability page 26First, 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.

Is the below concept “new” to social statements?

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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.

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Pages –32–34 list what is accepted, rejected, and questioned4.7 ConvictionsThe 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

PART VSUPPLEMENTAL INFORMATION

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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.gov63

Documents

Draft Social Statement on Genetics: Resource Florida Bahamas Synod Resource Group Summer 2010 1