Faith, Biotechnology, and Disability Fearfully and

Faith, Biotechnology, Faith, Biotechnology, and Disabilityand Disability

Fearfully and Wonderfully MadeFearfully and Wonderfully Made

The National Council of Churches The National Council of Churches Policy Statement on Human Policy Statement on Human

BiotechnologiesBiotechnologies

The ChallengesThe Challenges

Huge array of new biotechnologiesHuge array of new biotechnologies Traditional understandings of creationTraditional understandings of creation Scientific reductionism on one hand Scientific reductionism on one hand

with fundamentalism on the otherwith fundamentalism on the other New understandings of disability as New understandings of disability as

diversity and part of “what’s normal?’diversity and part of “what’s normal?’ New power to prevent birth of babies New power to prevent birth of babies

with disabilities and “customize” with disabilities and “customize” childrenchildren

National Council of ChurchesNational Council of Churches

Convene Task Force in 2000 to follow Convene Task Force in 2000 to follow up 1986 Policy on “Genetic Science up 1986 Policy on “Genetic Science for Human Benefit.”for Human Benefit.”

Work over three year period, 2002-Work over three year period, 2002-2005.2005.

First reading, 2005First reading, 2005 Adopted, 2006Adopted, 2006

Disability as Lens for Seeing the Disability as Lens for Seeing the IssuesIssues

In each of three sections:In each of three sections:

Our Theological Self UnderstandingOur Theological Self Understanding

The Church’s CallingThe Church’s Calling

Key Challenges for Church Key Challenges for Church EngagementEngagement

I. Our Theological Self I. Our Theological Self UnderstandingUnderstanding

(Lines 21-26) Our humility must extend as (Lines 21-26) Our humility must extend as well to our own limited knowledge of God's well to our own limited knowledge of God's infinite design. Human frailties have infinite design. Human frailties have allowed us too often to define too readily allowed us too often to define too readily what what constitutes "normal" or "whole" what what constitutes "normal" or "whole" or "able-bodied" life. In so doing we or "able-bodied" life. In so doing we relegate many of our sisters and brothers relegate many of our sisters and brothers to the status of "other", seeing only their to the status of "other", seeing only their differences, which we call "disabilities," differences, which we call "disabilities," rather than seeing them as those who rather than seeing them as those who manifest, like us, reflections of the manifest, like us, reflections of the imago imago deidei (Image of God). (Image of God).

I. (cont.)I. (cont.) (Lines 46-59) The potential impact of (Lines 46-59) The potential impact of

biotechnology on people with disabilities biotechnology on people with disabilities raises profound philosophical and raises profound philosophical and theological questions. Many people living theological questions. Many people living with disabilities have meaningful, with disabilities have meaningful, productive lives, and would state that the productive lives, and would state that the major suffering in their lives comes from major suffering in their lives comes from the environment and social context: the the environment and social context: the physical, attitudinal, and social barriers that physical, attitudinal, and social barriers that limit them much more than their disability. limit them much more than their disability. Disability is increasingly understood as Disability is increasingly understood as contextual and as simply one part, not the contextual and as simply one part, not the whole, of a person's identity. whole, of a person's identity.

I. Lines 46-59 cont.I. Lines 46-59 cont. As such, disability then raises questions about As such, disability then raises questions about

what it means to be human: whether disability what it means to be human: whether disability is seen as defect, disease, or simply a is seen as defect, disease, or simply a difference in the diversity of humankind, and difference in the diversity of humankind, and what it means to be a community that what it means to be a community that welcomes and supports everyone. Because welcomes and supports everyone. Because "disability" can so easily and frequently be a "disability" can so easily and frequently be a place where we encounter the human capacity place where we encounter the human capacity to make "one of us" into "the other," it calls for to make "one of us" into "the other," it calls for deep commitment to include the voices and deep commitment to include the voices and perspectives of people with disabilities and perspectives of people with disabilities and their families in the dialogue and decisions their families in the dialogue and decisions about the use of biotechnology in personal, about the use of biotechnology in personal, clinical, social, and political contexts.clinical, social, and political contexts.

Section I: continuedSection I: continued (Lines 77-84)Thus, in our biblical (Lines 77-84)Thus, in our biblical

understanding, our highest dignity as human understanding, our highest dignity as human beings is not individuality in an individualistic beings is not individuality in an individualistic sense. It is rather the paradox of sharing with sense. It is rather the paradox of sharing with all humans that we are each created uniquely all humans that we are each created uniquely in the image of God: "So God created in the image of God: "So God created humankind in his image, in the image of God humankind in his image, in the image of God he created them; male and female he created he created them; male and female he created them" (Genesis 1:27). The belief that every them" (Genesis 1:27). The belief that every person, no matter what race, nationality, person, no matter what race, nationality, gender, disability, or "genetic makeup" gender, disability, or "genetic makeup" embodies the image of God is a profound embodies the image of God is a profound declaration of the goodness God intends for declaration of the goodness God intends for all creationall creation

II. The Church’s Calling II. The Church’s Calling C. Pastoral CareC. Pastoral Care

Lines 223-261) Individuals and families are Lines 223-261) Individuals and families are faced with ever-increasing possibilities to faced with ever-increasing possibilities to shape life through use of genetics and shape life through use of genetics and biotechnologies. This challenges pastors to biotechnologies. This challenges pastors to adapt traditional roles and skills to a adapt traditional roles and skills to a growing variety of places and times where growing variety of places and times where people might struggle with the questions people might struggle with the questions of faith that may arise, or with how to of faith that may arise, or with how to apply their own faith and belief to the apply their own faith and belief to the decisions they face. Those roles include, decisions they face. Those roles include, but are not limited to: but are not limited to:

II. The Church’s Calling II. The Church’s Calling C. Pastoral Care (cont.)C. Pastoral Care (cont.)

· Pastoral presence at times of decision · Pastoral presence at times of decision and crisis, including marriage when issues and crisis, including marriage when issues of genetics arise, decisions about of genetics arise, decisions about pregnancy and the implications of testing, pregnancy and the implications of testing, guilt or blame in relation to those decisions, guilt or blame in relation to those decisions, response to a birth of a child with a genetic response to a birth of a child with a genetic condition, support at the times of onset of a condition, support at the times of onset of a genetic disease, and end of life issues genetic disease, and end of life issues related to terminal care.related to terminal care.


Pastoral assistance in determining Pastoral assistance in determining new forms of family and selfhood in new forms of family and selfhood in relation to new forms of conception relation to new forms of conception and medical treatment as individuals and medical treatment as individuals and families struggle to understand and families struggle to understand the personal, spiritual, and the personal, spiritual, and theological questions that are raised theological questions that are raised


Pastoral advocacy in the role of assisting Pastoral advocacy in the role of assisting individuals and families to acquire needed services individuals and families to acquire needed services or supports, or serving as an interpreter and bridge or supports, or serving as an interpreter and bridge between the worlds of families, faith, and between the worlds of families, faith, and healthcare. That bridging role can be two ways, healthcare. That bridging role can be two ways, helping families to understand the language and helping families to understand the language and perspective of health care professionals and, vice perspective of health care professionals and, vice versa, helping health care professionals to versa, helping health care professionals to understand the questions and feelings of families, understand the questions and feelings of families, particularly in relation to their issues of faith.particularly in relation to their issues of faith.


· Pastoral supports through a community · Pastoral supports through a community of faith that can be called and empowered to of faith that can be called and empowered to support individuals and families at times of support individuals and families at times of decision, loss, and need. The pastoral role of decision, loss, and need. The pastoral role of equipping and empowering a community of equipping and empowering a community of faith can be both proactive, through roles of faith can be both proactive, through roles of preaching and education, and reactive, in preaching and education, and reactive, in response to particular individuals and families. response to particular individuals and families. Chaplains, genetic counselors, and even Chaplains, genetic counselors, and even hospital ethics committees can become part of hospital ethics committees can become part of the larger equipment of the community of the larger equipment of the community of faith.faith.


The pastoral role and challenge is thus both large The pastoral role and challenge is thus both large and complex. It is also paradoxical, for it calls upon and complex. It is also paradoxical, for it calls upon clergy to know enough about the world of genetics clergy to know enough about the world of genetics and biotechnology to be alert and proactive, but and biotechnology to be alert and proactive, but also humble enough to know what they don't know. also humble enough to know what they don't know. The same is true for health care professionals, who The same is true for health care professionals, who are called to know enough about the spiritual and are called to know enough about the spiritual and religious implications of their work to be helpful, religious implications of their work to be helpful, but also to recognize the complexity and diversity but also to recognize the complexity and diversity of religious practices and understandings. With of religious practices and understandings. With humility and mutual respect we look forward to humility and mutual respect we look forward to more appreciative collaboration and more effective more appreciative collaboration and more effective support between clergy and health professionals.support between clergy and health professionals.

Key Challenges for Church Key Challenges for Church EngagementEngagement

(Lines 272-280)Of the many matters we could have (Lines 272-280)Of the many matters we could have chosen, we selected four areas that have been the chosen, we selected four areas that have been the subject of much current debate. We hold up these subject of much current debate. We hold up these four key challenges in light of our understanding of four key challenges in light of our understanding of the crux of the matter: (A) stem cell research, (B) the crux of the matter: (A) stem cell research, (B) disabilities, (C) the conduct of the biotechnology disabilities, (C) the conduct of the biotechnology industry, (D) new genetics or old eugenics, and (E) industry, (D) new genetics or old eugenics, and (E) concern for the fabric of the commonweal.concern for the fabric of the commonweal.

(Lines 301-304) Effective germ line could offer (Lines 301-304) Effective germ line could offer tremendous potential for eliminating genetic tremendous potential for eliminating genetic disease, bu tit would raise difficult distinctions disease, bu tit would raise difficult distinctions about “normal” human conditions that would about “normal” human conditions that would support discrimination against people with support discrimination against people with disabilities.”disabilities.”

Key Challenges for Church Engagement: Key Challenges for Church Engagement: B) Perception of DisabilityB) Perception of Disability

(Lines 402-437) Perception of Disability(Lines 402-437) Perception of Disability

The promise and danger of biotechnology is perhaps The promise and danger of biotechnology is perhaps nowhere more obvious than the ways it affects nowhere more obvious than the ways it affects people with disabilities and their families. There is no people with disabilities and their families. There is no one "disability" perspective on the use of one "disability" perspective on the use of biotechnology, for people with disabilities and their biotechnology, for people with disabilities and their families are first of all people, with different values, families are first of all people, with different values, theologies, and understandings about the purpose of theologies, and understandings about the purpose of life and God's call to care for one another. The use of life and God's call to care for one another. The use of tools and processes declared to be neutral and value tools and processes declared to be neutral and value free, and designed to relieve suffering, holds great free, and designed to relieve suffering, holds great promise when they can support the lives of people promise when they can support the lives of people with disabilities or alleviate unnecessary pain or with disabilities or alleviate unnecessary pain or suffering. (cont. next slide)suffering. (cont. next slide)

Perception of Disability (cont.)Perception of Disability (cont.) But biotechnology becomes profoundly But biotechnology becomes profoundly

disquieting to many with disabilities when disquieting to many with disabilities when disabling conditions or predictions are disabling conditions or predictions are equated with life long suffering, equated with life long suffering, imperfection, or disease. When those imperfection, or disease. When those personal and social values are combined personal and social values are combined with the power of technology to prevent with the power of technology to prevent the birth of a child with a disability or the birth of a child with a disability or defect, the possibility of a new eugenics defect, the possibility of a new eugenics fueled by social values, market forces, and fueled by social values, market forces, and personal choice, rather than official policy, personal choice, rather than official policy, becomes quite real.becomes quite real.


Our reflection causes us to challenge the assumptions that Our reflection causes us to challenge the assumptions that everything needs to be "fixed" or "improved" and that we everything needs to be "fixed" or "improved" and that we know how best to do this; and that just because something know how best to do this; and that just because something cancan be done does not mean it be done does not mean it oughtought to be done. Science to be done. Science cannot save us from finitude. The pre-supposition for life cannot save us from finitude. The pre-supposition for life and appreciation of the whole human person as an entity and appreciation of the whole human person as an entity argue for society to offer no disincentives to reproduction argue for society to offer no disincentives to reproduction by and of persons with disabilities, in the absence of by and of persons with disabilities, in the absence of deliberate cruelty and undue hardship.deliberate cruelty and undue hardship.

Among the principles that have been identified by those Among the principles that have been identified by those with disabilities which ought to guide application of with disabilities which ought to guide application of biotechnologies, and which we affirm are:biotechnologies, and which we affirm are:


a) The use of new human genetic discoveries, a) The use of new human genetic discoveries, techniques and practices should be strictly regulated to avoid techniques and practices should be strictly regulated to avoid discrimination and protect fully, and in all circumstances, the discrimination and protect fully, and in all circumstances, the human rights of people with disabilities.human rights of people with disabilities.

b) Genetic counseling that is non-directive and rights b) Genetic counseling that is non-directive and rights based should be widely available and reflect the real based should be widely available and reflect the real experience of disability,experience of disability,

c) Parents should not be formally or informally pressured c) Parents should not be formally or informally pressured by medical, insurance or governmental policy to take by medical, insurance or governmental policy to take prenatal tests or undergo "therapeutic" terminations,prenatal tests or undergo "therapeutic" terminations,

d) Organizations of disabled people must be represented d) Organizations of disabled people must be represented on all advisory and regulatory bodies dealing with human on all advisory and regulatory bodies dealing with human genetics,genetics,

e) The human rights of disabled people who are unable e) The human rights of disabled people who are unable to consent are not violated through medical interventions to consent are not violated through medical interventions

D. New Genetics or Old EugenicsD. New Genetics or Old Eugenics

(Lines 547-563)Along with consideration of racial and ethnic (Lines 547-563)Along with consideration of racial and ethnic bias the issue of social class and economics location must be bias the issue of social class and economics location must be considered. Emerging biotechnologies could become a considered. Emerging biotechnologies could become a forceful means of social division with the poor, or near poor, forceful means of social division with the poor, or near poor, denied the health benefits such technologies may offer denied the health benefits such technologies may offer others with greater financial means.others with greater financial means.

As in the case of disability, bias based on race, ethnicity and As in the case of disability, bias based on race, ethnicity and class have been historically compounded within American class have been historically compounded within American society in ways that thwart democracy and scandalize society in ways that thwart democracy and scandalize Christian morality. Left unchecked and unregulated event the Christian morality. Left unchecked and unregulated event the bright promise of biotechnologies could be dimmed by their bright promise of biotechnologies could be dimmed by their application in ways that foment human misery and social application in ways that foment human misery and social injustice. Such a bleak outcome would lead us as a human injustice. Such a bleak outcome would lead us as a human race not into an age of new genetics but a return toward a race not into an age of new genetics but a return toward a lamentable old eugenics.lamentable old eugenics.

(Continued next slide)(Continued next slide)

D. New Genetics or Old Eugenics D. New Genetics or Old Eugenics (cont.)(cont.)

The social fabric can be rent or more The social fabric can be rent or more closely woven by the ways in which closely woven by the ways in which our societies meet the challenge of our societies meet the challenge of emerging biotechnologies. We emerging biotechnologies. We believe that it is our Christian duty to believe that it is our Christian duty to address these issues on behalf of the address these issues on behalf of the least, lost, and marginalized of our least, lost, and marginalized of our world.world.

Policy StatementPolicy Statement

Available at Available at http://

www.ncccusa.org/pdfs/adoptedpolicy.pdf

Other material is at: http://www.ncccusa.org/biotechnology

QuestionsQuestions

Did the Task Force get the disability Did the Task Force get the disability issues and perspectives right?issues and perspectives right?

How could/should the Policy How could/should the Policy Statement be used?Statement be used?

Feedback and Ideas WelcomeFeedback and Ideas Welcome

Rev. Bill Gaventa, Associate Rev. Bill Gaventa, Associate ProfessorProfessor

Dept. of Pediatrics, RWJMS-UMDNJDept. of Pediatrics, RWJMS-UMDNJ

The Boggs Center on The Boggs Center on Developemental DisabilitiesDevelopemental Disabilities

Email: Email: [email protected]@umdnj.edu

Phone: 732-235-9304Phone: 732-235-9304

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Faith, Biotechnology, and Disability Fearfully and