Draft Social Statement on Genetics: Resource

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

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

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

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

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.

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

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/2010/division+i/protocol+decided+for+sickle+cell+testing_04_13_10_ncaa_news

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.”

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.

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

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.

Part I INTRODUCTION

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

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

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

Examples of Ground Breaking Technologies (cont.) • Social use or implications: such as in criminology and DNA evidence

Part iiethical concerns

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.

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).

How might we evaluate developments in science 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).

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).

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).

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-in-Process/Genetics/Studies/GMOs.aspx

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).

Part IIITheological Concerns

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

Part IVScientific developments

Three topics explored in the draft: (Suggested ideas for discussion) • Genetic Manipulation of Plants & Animals • Stem Cell Research • Genetic Testing

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

Prof. William Rodriquez Bethune Cookman University Bioethics Lecture

Genetic Engineering in Agriculture Pros Cons Playing with nature Unintended consequences Will this tech be available to all or just the affluent? • Increased food production to ameliorate world hunger • Specifically tailor meds and vaccines to patients

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.

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

Are GMO’s good or bad? • Inconclusive and complexEvidence 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 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)

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

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 ?

Molecular Medicine Pros Cons Prohibitive cost Who should have access? What conditions? Medical rationing necessary Infant or adult stem cells? Human Cloning • Cure diseases such as cancer • Specifically tailor meds and vaccines to patients • Ameliorate organ shortage

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.

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.

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.

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.

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.

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?

Draft Social Statement on Genetics: Resource