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11.2 Prenatal Testing And Disability: The Need For A Participatory Approach To Research

- Kyle W. Anstey.
Centre for Applied Philosophy and Public Ethics, 
Department of Philosophy,
The University of Melbourne, Australia

Asian bioethics has long emphasized the need for bioethicists to seek wider public consultation and debate. The recent Eubios Declaration for International Bioethics (2002) is an excellent example. The product of extensive discussion, it describes bioethics as first "an interdisciplinary field that needs to be nourished by debate among all disciplines and people, not limited to any academic specialty or professionals."[1]

This sensitivity to various perspectives has emerged within the context of pursuing meaningful cross-cultural discussions of bioethics. To better appreciate these perspectives, many bioethicists have pursued empirically-oriented research, a notable example being Macer's (1993) International Bioethics Survey.[2]

I am very supportive of this type of research. Yet, today I want to set aside cross-cultural issues and focus on a different matter. With reference to the case of prenatal testing (PNT), I will argue that bioethics is not, from the perspective of persons with disabilities, a field nourished by interaction with their perspectives. Further, I will show that persons with disabilities often identify tokenism in what consultation exists, and see the results of bioethical scholarship as irrelevant, or even harmful.[3]

Next, I will provide some reasons in favour of bioethicists dealing with these criticisms. I will then advance recommendations for how bioethicists can address these issues through a more participatory research model. Here I will argue that within the disciplinary constraints of bioethics research, questionnaires are a good starting point for entering a meaningful dialogue about issues like PNT.

I.

Ward (2002) is one of several disability theorists to note that the views of persons with disabilities - and in particular, those persons with learning disabilities - have been largely absent from public discourse surrounding "developments in the new genetics." Instead, Ward argues that discourse in this area has been dominated "by scientists, the medical profession and health economists."[4]

To be sure, many conferences on genetics and disability now seek more balanced representation among the participant's backgrounds. Further, some disability organizations have organized their own conferences on this topic.[5] Yet, other disability organizations resist both of these types of efforts for greater consultation. Here the efforts of bioethicists and/or medical professionals to include persons with disabilities is seen as tokenism, rather than a desire to seriously engage with disability perspectives. Further, some feel that their presence is intended to serve the purpose of legitimizing bioethical discussions of disability. Conversely, the entrance of some bioethicists into disability forums has also been resisted on the grounds that it may indicate support for their positions.[6]

Shifting focus from conferences to the bioethics literature, two other negative perceptions of bioethical discussions of disability are evident. In the case of PNT, charges arise that research is both irrelevant, and harmful. Not wanting to give the impression that my own work is somehow immune to negative reactions from persons with disabilities, I will show that both of these charges have been directed towards it.

In reviewing articles by Harris (2000) and myself (2002) related to the topic of genetic testing, Australian disability advocate David Turnbull notes: "Both accounts are philosophical attempts to create a coherent conceptual position in bioethics. The problem is that they are the kind of philosophy that makes coherence a value in itself without regard for actual social relations."[7]

Many disability theorists take the view that bioethics literature is too abstract to be of practical use to persons with disabilities.[8] Yet, what worries disability advocates most about ethical discourse surrounding issues like PNT is not simply that it will fail to capture the realities of the lives of people with disabilities. A deeper fear exists that such discussions will clear the way for their unjust treatment. Nowhere is this more evident than in responses to ethicists' use of the concept of "personhood." To be sure, many health professionals, philosophers, and disability advocates will agree that a better definition of "serious" genetic conditions is needed to define appropriate targets of PNT and screening. For some philosophers, including myself, personhood has been a useful concept for beginning this project. Yet, this use of the concept is overwhelmingly resisted by disability advocates. One example of this is again found in Turnbull's analysis of my work. He contends that: "Anstey demonstrates another deficiency-that in the understanding of persons- when he says of his own work "this analysis has acknowledged the existence of conditions that inherently produce extreme burdens: however, these serve to make distinctions not between persons, but instead between persons and non-persons." This kind of understanding of persons lies at the heart of the genuine fear that people in the disability movement have of philosophers-that they pave the way for the kinds of treatment at the hands of others that is meted out to beings that are less than persons.[9]

Consistent with Turnbull's insight, Best (2002) argues that a distinction between persons and non-persons is largely responsible for the disability community's negative response to the work of Peter Singer. That is, "what alarms Singer's detractors most is their sense that he is on a dangerous slippery slope, whereby today someone with Alzheimer's disease fails to be a "person" and tomorrow someone with a bad memoryc"[10]

Many will find fault with slippery slope arguments: indeed, their appeal depends on reference to consequences that they do not show will eventuate. Others might take issue with one account of personhood, rather than use of the concept per se. But all these points will likely be immaterial to persons with disabilities. In invoking personhood, any account that uses this concept to distinguish between humans becomes suspect.

II.

It is all to easy for the ethicist to take the view that their approach to research does not require modification in view of perceptions and poor argumentation, and dismiss the views of some disability advocates as militant or extremist. This seems especially true if one sees the enterprise of applied philosophy as limited to the settling of moral and political disagreement by appeal to rationality. The Eubios Declaration would describe this as "prescriptive" or "normative" bioethics, and notes "descriptive bioethics" as an alternative approach. Here bioethics is concerned with "understanding the way people view life, their ethical interactions and responsibilities with living organisms in their life."[11]

A purely prescriptive analysis might be acceptable when the boundaries of its expression and discussion fall within academia. Yet, the views of bioethicists are increasingly entering into the domain of the wider community. Ethical commentary in op-ed pieces is a good example of this.[12]

When ethicists enter the public domain, it must be recognized that their views have consequences that do not obtain when the discussion is hidden within academic institutions.[13] In addition to being sensitive to this fact, ethicists need to appreciate the nature of the community they are addressing, and communicate to them why they are being addressed, and what they hope to accomplish from this. These considerations demand that one take a wider view that understands both descriptive and prescriptive projects as necessary parts of bioethics research.

I say this not to discourage bioethicists from seeking wider venues for their ideas. For reasons I will soon explicate, I think this is a good thing. However, to address the issues I just raised, I think it is clear that what is required is dialogue with everyday people, not simply commentary about their lives. Here people, such as those with disabilities, are partners, not audiences, and a two (as opposed to one) way flow of information is encouraged.

Thus, any ethical inquiry that addresses a broader community is appropriately characterized by some as "an invitation to dialogue." Here theorists articulate their own understanding of concepts, but do so in a manner that affords others outside the discipline the opportunity to share their own understandings of key concepts, and offer others for consideration. Where there is a lack of agreement, an "essentially contested" concept, there exists an opportunity for either party to re-examine their views. Such dialogue establishes "the boundaries of a community of understanding." Within these boundaries, bioethicists can encourage others to reject or accept certain understandings of concepts.[14] But importantly, both bioethicists and persons with disabilities are "inside" a dialogue, rather than the latter being dismissed as outside of, or missing the point of "the" dialogue.

As I will later show, questionnaires are one way to provide persons with disabilities the opportunity to engage in such dialogue, while still permitting prescriptive bioethical endeavours. However, first I want to provide some reasons why bioethicists ought to take this wider view of research.

If one grants that applied philosophy has an obligation to make its work useful to the wider community, then, however this obligation is characterized, there are good reasons for consulting persons with disabilities. The first is more pragmatic. Prominent disability theorists like Oliver (1992) highlight the fact that "if disabled people are alienated from the process of research, they will ignore or argue the finding."[15]

A different argument can be made with greater confidence, and applies even if one takes the view that work in bioethics need not be relevant outside the community of bioethics scholars. That is, if we ignore the perspectives of persons with disabilities, our analysis of issues like PNT is likely to be inaccurate.

To be sure, the "disability perspective" is often noted in bioethics literature. Here the "medical model" understanding of disablement as synonymous with a medical conditions is contrasted with a view of disability as resulting primarily from the situation of these impairments within social environments.

However, it is inappropriate to identify "the" disability perspective in the same way it is problematic to identify "the" feminist perspective. In both cases, this obscures significant differences in perspectives on the nature of the people at issue in the analysis, the burdens they experience, and how to respond to these burdens.

Theorists such as Bichenbach et al (1999) have identified at least two major perspectives among the views of persons with disabilities. On the first, "minority rights" perspective, people with disabilities are identified as members of a minority group(s). That is, like other minority groups, such as racial minorities, persons with disabilities are understood to share an experience of social injustice. The central feature of this experience is discrimination, and the effects of past discrimination. Further, like members of other minority groups, many persons with disabilities take pride in their shared experiences, and unique perspectives. Thus, those holding a minority rights view feel that persons with disabilities should acknowledge, or even emphasize, their minority group affiliation. In pursuing social equality for this group, they believe that our energies should focus on extending legal rights to persons with disabilities in order to protect them against unjust discrimination, and correct for past injustices of this sort.[16]

By contrast, a "universalist" perspective focuses on the entire lifespan of an individual, and notes that everyone will experience ability limitations within the course of their life. Thus, the phenomenon of disablement is not restricted to some minority of the population, as the point-in-time identification of disability in the minority perspective suggests. Instead, it is an experience of social injustice by various individuals at different stages of their life, all of whom experience environments and policies that fail to accommodate their abilities. In view of this, disablement is more a problem of distributive injustice requiring positive attention, rather than negative protections from discrimination.[17]

Despite the fact that the existence of disagreements within the disability community is often noted by bioethicists, they nevertheless tend to focus on common themes evident in "the" disability critique of PNT. Yet, the amalgamated perspective that results tends to closely resemble the minority rights position.

A good example of this is found in a seminal work on PNT and disability. The result of 3 years of discussion, Parens and Asch's (1999) "The Disability Rights Critique of Prenatal Testing" is arguably the most comprehensive review of literature examining the ethics of PNT. However, as the title suggests, Parens and Asch see disability perspectives through a minority lens. They argue that granting "the non-neutrality of the trait and the "ab-normality" of the person's needs is necessary for expressing the commitment to moral equality and equality of opportunity."[18] Consequently, Parens and Asch argue that "there is nothing paradoxical about appreciating the descriptive sense in which people with disabling traits are abnormal while also appreciating the evaluative or moral sense in which they are normal."[19] Taking the case of blindness, Parens and Asch argue that "it is not reasonable to say that the trait of blindness is normal. Statistically speaking, it is not."[20]

No universalist reply is considered in their analysis. Briefly, this might have highlighted the fact that many physical disabilities are not so abnormal in view of the entire human lifespan. While poor vision might is a good example of this, it must be conceded that blindness will remain statistically "abnormal" in these terms. However, the issue of how blindness is identified as a disability (as opposed to an impairment) remains. While blindness may be descriptively abnormal, the social limitations of opportunity associated with it and other disabilities need not be. Universalists suggest that attention to these social, as opposed to inherent limitations is required for a "commitment to moral equality."

Thus, substantial disagreements are hidden in talk of "the" disability critique of PNT. This is not only inaccurate but, as I will discuss shortly, fails to expose important links between the neglected perspectives, and what consequences one identifies as following from the offer of PNT for disability.

III.

The acceptance and accuracy of bioethics research should improve with increased consultation with persons with disabilities. Despite this fact, the work of the vast majority of theorists responding to PNT, myself included, shows little indication of being the product of such consultation.[21]

Yet, if we agree that research should admit these perspectives, how to we do so in a way that addresses the negative perceptions that exist toward it among persons with disabilities? Are these participatory demands too great for the typically individual pursuit of bioethical scholarship?

I argue that use of questionnaires is one way bioethics scholarship can begin to respond to the concerns persons with disabilities have about their participation in research. I say "one way" for two reasons. First, there is little consensus on what good disability research looks like. I therefore do not want to offer questionnaires as some sort of ideal model for disability research. There is, however, substantial agreement as to what disability research should not look like. The negative trends I identified speak to this, and I think questionnaires can avoid them.[22] Second, questionnaires may be unsuitable for entering a dialogue with some persons with disabilities about PNT. Those with learning disabilities are an excellent example. PNT has been successfully discussed with these individuals via workshops and focus groups.[23]

I have several reasons for seeing questionnaires as a starting point for establishing a dialogue between bioethicists and persons with disabilities. First, I will emphasize them as a process of consultation as opposed to a methodology for arriving at ethical conclusions. Thus, my analysis should not be understood as unsupportive of other ways of engaging in this dialogue. Second, as I noted at the outset, some bioethicists are already willing to admit their place within bioethics research. Finally, I have used questionnaires in my own research, in the form of a national survey of the views of Australian disability organizations towards disability and PNT. Many organizations have been extremely pleased about being consulted on this issue, and the preliminary data on their responses is extremely informative.[24]

Nevertheless, both persons with disabilities, and bioethicists, can offer good reasons against using questionnaires as a vehicle for increased consultation.Beginning with the latter, many bioethicists might take the position Leavitt (1994) advances in response to Macer's questionnaire. He argues that "it is not clear that the subject matters of ethics lend themselves to quantitative studies." f.'s arguments for this are that questionnaires do not encourage deep moral reflection, and that their "results may provide too easy a basis for generalizations."[25]

In response to this position, I should stress that I do not see questionnaires as a way to arrive at ethical conclusions. Nor do I view these as simply one, limited occasion for reflection by persons with disabilities. Instead, they ought to be seen as a means of securing a group of persons with disabilities with whom to begin the process of a wider dialogue about PNT. In other words, the questionnaire should be offered so as to establish an expectation that the research that follows from it will be disseminated for discussion with persons with disabilities.

Within analysis, questionnaires may allow bioethicists to better appreciate what perspectives persons with disabilities hold, and how they influence their response to prenatal diagnosis. This may then facilitate the development and prioritization of research questions, and provide helpful information that avoids theoretical oversights of the sort I noted earlier, as well as inappropriate examples and conclusions.[26] Further, philosophical methods can be employed to evaluate these perspectives, and the views of PNT that follow from them. In later dialogue with the participants, these can then enrich the debate over the appropriate understandings of essentially contested concepts. However, conclusions can only be reached as the product of such discussion .

Many persons with disabilities might question the use of questionnaires as a means of addressing some of the shortcomings of bioethical discourse on PNT. Indeed, questionnaires are employed in other quantitative and qualitative studies they see as contrary to their interests. Here it has been observed that hierarchical research models often lead to the lack of consultation experienced by people with disabilities. That is, people with disabilities are seen as passive subjects that research is carried out on, rather than active participants it is undertaken with. This grants control and power to the researcher over the nature and direction of the research.[27] Bearing this in mind, one may rightly question how questionnaires could help challenge this state of affairs, as opposed to worsening it.

Questionnaires need not be one more study of persons with disabilities as subjects. Nevertheless, to avoid this charge, they must be carefully constructed, offered, conducted, and disseminated . First, inappropriate questions need to be avoided in the questionnaires themselves. Here focus groups of persons with disabilities can play an important role. Also, questionnaires can be piloted with significant opportunities for comments, and explicit questions as to how they might be improved.

In constructing both the pilot, and final questionnaires, one must acknowledge methodological limitations. One important consideration is to recognize that more descriptive studies are a good thing: providing considerable space for written comments may hinder empirical analysis, but they help to ensure that unique perspectives are enlisted rather than forcing respondents to echo those of the bioethicist. It is also important to be sensitive to how ethical concepts like personhood are understood by persons with disabilities, and seek to engage in a dialogue about what is problematic about them.[28]

In offering persons with disabilities an opportunity to participate in research, bioethicists need to clarify what benefits they can expect to follow from it. In areas of inquiry such as PNT, where the harms are so hard to characterize, so too are the benefits of bioethics research. Therefore, I agree with others who note the importance of researchers acknowledging that, at least in the short term, they may be the largest beneficiaries of their work.[29] This can help reinforce the message that the researcher is ultimately motivated to improve the life of persons with disabilities, but recognizes that pursuit of this goal may itself produce power imbalances.[30]

A third task in offering an opportunity for participation in research is to clearly show how its results will be used, and establish a clear expectation that they will be disseminated for discussion with the participants. As I've already noted, this expectation it is crucial, as it emphasizes the participation as an ongoing contribution to dialogue about PNT. Further, it deals with a major reason why people with disabilities see research as irrelevant to their lives. That is, people with disabilities identify a tendency for researchers to "move on" after their treatment of an issue.[31] If distributed in a fashion that creates demands for dissemination to the sample, and the wider community, use of questionnaires establishes accountability that helps prevent the researcher from "moving on" unnoticed.

The role I see questionnaires playing in bioethics research gives persons with disabilities a clear role in developing and prioritizing research questions, informing analysis, and interacting with the results. Yet, some will argue that this does not go far enough, as persons with disabilities are not understood here as co-participants in bioethical analysis.

Given the negative trends I've discussed, it is understandable why persons with disabilities may be suspicious of any aspect of research that fails to admit their full participation. Yet, I argue that if bioethics research is to have any emancipatory potential for persons with disabilities, then there must be scope for the bioethicist to independently reflect on ethical questions, and advance recommendations. One of the strengths of ethical literature is its ability to resist widely held views. Given the popular support for PNT and termination of disability, persons with disabilities who have issues with this practice ought to resist ethical conclusions being products of wider social consensus.

While ethical conclusions themselves should not be matters of political contestation, they can contribute to political positions by offering rationale as to why an a particular practice ought to be opposed or supported. Yet, to offer these reasons, we need to be have confidence in the lenses we employ to view practices like PNT. Further, we must be sure that the burdens, or lack thereof, that we see are consistent with the view these lenses afford. Yet, as others have observed, disability studies is theoretically underdeveloped.[32] Thus, others like Barnes therefore rightly see emancipatory research as "demystifying the structures and processes that create disability and to develop communication between the research and the disabled community."[33]

There is therefore a great need for more research on the nature of disablement. Yet, drawing on the scant existing research, we can still help address the almost complete lack of application of this theory to practices such as PNT. This, in turn, may aid the disability in political discussions of this issue by helping to clarify exactly why this practice is, or is not, problematic.

For example, Bickenbach et al have highlighted two major difficulties with a minority rights approach. First, identifying persons with disabilities as a minority group seems to fail to respect the diversity of their conditions and experiences. Second, such classification demands eligibility requirements for group membership, dividing persons into two groups: those with disabilities, and those without. Bickenbach and others see this as reinforcing salient aspects of the medical model of disability that minority rights theorists resist.[34]

Bioethics literature notes two prominent consequences that persons with disabilities fear will follow from PNT. Interestingly, one of these fits well with a minority rights perspective, and the other with a universalist perspective. Briefly, "slippery slope" arguments charge that PNT starts society down a slope by reducing, in reality or appearance, the number of persons with disabilities. At the bottom of the slope lies disproportionately reduced funding for persons with disabilities, and or an increase in discrimination towards them.[35] Here the emphasis on the size and influence of persons with disabilities as a group relative to the rest of society fits is consistent with a minority rights perspective.

By contrast, "expressivist" arguments contend that PNT focuses on one condition or characteristic of a potential child. This ignores all of the other features of the child, and sends the harmful message to persons sharing this condition or characteristic, and others like it, that they are less valuable members of society because of their genetic constitution.[36] The expressivist focus on emphasizing the range of positive features of a child, as opposed to singling these out, better fits with the importance universalist perspectives place on responding to the range of abilities that exist, rather than singling out the needs persons may have at a particular point in time.

We can't predict what the cumulative effect of so many individual decisions will be for persons with disabilities. However, engaging in a dialogue with persons with disabilities regarding which perspective on disability is more appropriate, and what consequences ought to be feared in view of this, has the potential to get us closer to agreement on how to understand PNT as a problem.

Acknowledgements

I thank Dr. Lynn Gillam, Dr. Christopher Newell and Dr. Robert Sparrow for their helpful comments on drafts of this paper. Attendance at the IV Asian Conference of Bioethics was made possible by the generous support of the Centre for Applied Philosophy and Public Ethics, The University of Melbourne.

References

Anstey, Kyle W. "Are Attempts to Have Impaired Children Justifiable?" Journal of Medical Ethics 28 (2002): 286-88.
---. "Sex Selection and Disability Avoidance: Is Their Opposed Treatment Conceptually Consistent?" Monash Bioethics Review 21, no. 1 (2002): 10-28.
Asch, Adrienne , and Eric Parens, eds. Prenatal Testing and the Disability Rights Critique. Washington: Georgetown University Press, 2000.
Asch, Adrienne, and Michelle Fine. "Disability Beyond Stigma: Social Interaction, Discrimination, and Activism." Journal of Social Issues 44, no. 1 (1988): 3-21.
Barnes, C. "Qualitative Research: Valuable or Irrelevant?" Disability and Society 10, no. 3 (1992): 378-81.
Bickenbach, Jerome Edmund, Somnath Chatterji, Elizabeth Badley, and T. Bedirhan Ustun. "Models of Disablement, Universalism, and the International Classification of Impairments, Disabilities, and Handicaps." Social Science and Medicine 48 (1999): 1173-87.
Bochel, C, and H Bochel. "Researching Disability: Insights from and on the Social Model." International Journal of Rehabilitation Research 17 (1994): 82-86.
Bricher, Gillian. "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?" Disability and Society 15, no. 5 (2000): 781-93.
Bury, M. "Disability and the Myth of the Independent Researcher: A Reply." Disability and Society 11, no. 1 (1996): 111-13.
Felske, AW. "Knowing About Knowing: Margin Notes on Disability Research." In Disability Is Not the Measles: New Research Paradigms in Disability, edited by M Rioux and M Bach, 181-99. Toronto: The Roeher Institute, 1994.
Gillam, Lynn. "Prenatal Diagnosis and Discrimination against the Disabled." Journal of Medical Ethics 25, no. 2 (1999): 163.
Gleeson, B.J. "Disability Studies: A Historical Materialist View." Disability and Society 12, no. 2 (1997): 179-202.
Harris, John. "Is There a Coherent Social Conception of Disability?" Journal of Medical Ethics 26, no. 2 (2000): 95.
Incorporated, Queensland Advocacy. "Genetics & Disability: Exploring Different Spaces, Different Futures." Paper presented at the Genetics & Disability: Exploring Different Spaces, Different Futures, Brisbane, Australia 2002.
International, Disabled People's, and British Council of Disabled People. "Proceedings of a Seminar: Bioethics and Disabled People." Paper presented at the Bioethics and Disabled People, London 1997.
Leavitt, F.J. "Bioethics Surveys and the Quantification of Ethics." In Bioethics for the People by the People, edited by Darryl Macer, 174-76: Eubios Ethics Institute, 1994.
Mundy, Liza. "A World of Their Own." The Washington Post, March 27 2002, W22.
Newell, C. "Editorial Comment." Nursing Ethics 9, no. 5 (2002).
Oliver, M. "Changing the Social Relations of Research Production." Disability, Handicap and Society 7, no. 2 (1992): 101-14.
---. "Re-Defining Disability: A Challenge to Research." In Disabling Barriers-Enabling Environments, edited by J Swain, et al. London: Sage, 1993.
Parens, Erik, and Adrienne Asch. "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations." The Hastings Center Report 29, no. 5 (1999): S1-S22.
Ramcharan, P, and G Grant. "Setting One Agenda for Empowering Persons with a Disadvantage in the Research Process." In Disability Is Not the Measles: New Research Paradigms in Disability, edited by MH Rioux. Toronto: Roeher Institute, 1994.
Turnbull, David. "Bioethics, Eugenics, Disability and the Removal of Harm." Queensland Advocacy Incorporated Newsletter April (2002): 12-27.
Ward, L. "Whose Right to Choose? The 'New' Genetics, Prenatal Testing and People with Learning Difficulties." Critical Public Health 12, no. 2 (2002): 187-200.
Ward, L, and M Flynn. "What Matters Most: Disability Research and Empowerment." In Disability Is Not the Measles: New Research Paradigms in Disability, edited by M Rioux and M Bach, 29-48. Toronto: The Roeher Institute, 1994.
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[1] Eubios Ethics Institute and the Tsukuba Bioethics Roundtable on International Bioethics. gEubios Declaration for International Bioethics.h 1 March, 2002. Accessed October 17, 2002. Available at Eubios Bioethics Institute, http://eubios.info/eeidec.htm

[2] Macer, Darryl. gInternational Bioethics Survey Questionnaire.h In In Bioethics for the People by the Peopleh Darryl R.J. Macer ed. Tusukuba, JPN. Eubios Ethics Institute 1994: 242-248.

[3] These mirror critiques often levelled at quantitative and qualitative research more generally. Bricher (2000) provides a good overview of research by disability theorists on these charges. A failure of researchers to adequately consult persons with disabilities is noted by many theorists, including Oliver (1992). See M. Oliver, "Changing the Social Relations of Research Production," Disability, Handicap and Society 7, no. 2 (1992). Tokensim is discussed by Ramsharan & Grant (1994) in the context of research teams including gtoken disabled people.h P Ramcharan and G Grant, "Setting One Agenda for Empowering Persons with a Disadvantage in the Research Process," in Disability Is Not the Measles: New Research Paradigms in Disability, ed. MH Rioux (Toronto: Roeher Institute, 1994). Later work by Oliver (1993) provides a useful discussion of the relevance of research results to persons with disabilities. He gsuggests that unless disabled people are involved in the development of research, inappropriate questions will be asked.h M. Oliver, "Re-Defining Disability: A Challenge to Research," in Disabling Barriers-Enabling Environments, ed. J Swain, et al. (London: Sage, 1993). Finally, Fine and Asch (1988) note the perception of harmful results, finding that gmany studies are seen to reinforce or perpetuate stereotypes rather than challenging them.h Adrienne Asch and Michelle Fine, "Disability Beyond Stigma: Social Interaction, Discrimination, and Activism," Journal of Social Issues 44, no. 1 (1988). All Cited in Gillian Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?," Disability and Society 15, no. 5 (2000).

[4] L Ward, "Whose Right to Choose? The 'New' Genetics, Prenatal Testing and People with Learning Difficulties," Critical Public Health 12, no. 2 (2002): 187.

[5] On October 7, 2002 Queensland Advocacy Incorporated (QAI) held an interdisciplinary workshop on disability and bioethics which brought together disability advocates, ethicists, scientists, and genetic counsellors . Earlier conferences of this sort include eBioethics and Disabled People', a seminar organized by the British Council of Disabled People (BCODP). Both seminars shared the objective of increasing dialogue between persons with disabilities and other professional fields, and emphasizing the importance of listening to persons with disabilities viewpoints on bioethics. See Queensland Advocacy Incorporated, "Genetics & Disability: Exploring Different Spaces, Different Futures" Brisbane, Australia, 2002.; Disabled People's International and British Council of Disabled People, "Bioethics and Disabled People" London, 1997.

[6] A paradigm case that captures all of these points is found in the response of the disability organization eNot Dead Yet' to the views of Peter Singer. This was quite forcefully put to me when I posted a critique on a bioethics listserve of the approach this group is taking to oppose Singer's views. In response to a demonstration outside a function Singer was attending in Philadelphia, I argued that git is Peter Singer's arguments that should be attacked, not Peter Singer himself: these protests encourage more the demonisation of Singer than critical engagement with the views that he holds.h I suggested that Singer had shown himself quite open to publicly debating disability perspectives, and that disability advocates ought to direct their energies to challenging his views in these forums (Bioethics and Disability listserve, bioethics@yahoogroups.com, 6/26/02). In reply, Steve Drake, a member of Not Dead Yet, replied that gMany disability rights activists-many of them in eNot Dead Yet'-did the routine of writing in journals, appearing at conferences, etc. for many years. The results? Token pats on the head and firmly relegated to the margins. Protest is . . . a way to get in at the table and from a position of greater power than would be the case otherwise (Bioethics and Disability listserve, bioethics@yahoogroups.com, 6/28/02) Just as Not Dead Yet see their participation in bioethics forums as essentially disempowering, they have also opposed invitations to Singer to participate in disability forums for similar reasons. In a letter to the executive director of the Governor's Commission on Disability, Not Dead Yet President Diane Coleman asks that an invitation to Singer to participate in the Governor's Council be withdrawn, fearing that he will use it gto claim that his views are a legitimate topic for debate within the disability community itself.h Diane Coleman, Letter to Mr. Michael D. Jenkins, Executive Director, Governor's Commission on Disability, August 6, 2001. Available from Ragged Edge Magazine Online at http://www.raged-edge-mag.com/extra/colemanjenkins.htm

[7] David Turnbull, "Bioethics, Eugenics, Disability and the Removal of Harm," Queensland Advocacy Incorporated Newsletter April (2002): 19. See John Harris, "Is There a Coherent Social Conception of Disability?," Journal of Medical Ethics 26, no. 2 (2000). and Kyle W. Anstey, "Sex Selection and Disability Avoidance: Is Their Opposed Treatment Conceptually Consistent?," Monash Bioethics Review 21, no. 1 (2002).

[8] This may be symptomatic of a more general perception of philosophers that Brock (1987) succinctly characterizes as being gunrealistich, ghead in the cloudsh givory towerh academics. He understands this perception to exacerbate a gcredibility problemh philosophers have in public policy circles. See Dan W. Brock, gTruth or Consequences: The Role of Philosophers in Policy Making.h Ethics 97 (1987): 786-91.

[9] Turnbull, "Bioethics, Eugenics, Disability and the Removal of Harm,": 18.

[10] Dr. Steven Best, gPhilosophy Under Fire: The Peter Singer Controversyh 2002. Accessed: October 17, 2002. Available at http://www2.utep.edu~best/underfire.htm

[11] gPrescriptive or normative bioethics examines what is ethically good or bad, or what principles are most important in making such decisions. It may also be to inquire into when to say something or someone has rights, and others have duties to them.h Eubios Ethics Institute and the Tsukuba Bioethics Roundtable on International Bioethics. gEubios Declaration for International Bioethics.h 1 March, 2002. Accessed October 17, 2002. Available at Eubios Bioethics Institute, http://eubios.info/eeidec.htm

[12] An example of this is the flurry of discussion in various media surrounding the case of a deaf American couple who attempted to ensure the birth of a deaf child via artificial insemination with the sperm of a deaf donor. For a description of this case, see Liza Mundy, "A World of Their Own," The Washington Post, March 27 2002. I was one of several ethicists who, in Christopher Newell's words gvirtually queued up at the microphone to pass judgement on this couple.h C. Newell, "Editorial Comment," Nursing Ethics 9, no. 5 (2002). See Kyle W. Anstey, "Are Attempts to Have Impaired Children Justifiable?," Journal of Medical Ethics 28 (2002). Newell makes a fair point in arguing that such discussions spend too much time gcasting judgementh and too little listening so as gto understand the realities of people's lives.h In so doing, he feels they miss gthe muckiness of everyday ethical decision making, which goes beyond rationality and rigorously applied formulas.h See Newell, "Editorial Comment,".

[13] When ethicists enter the public domain, it must be recognized that their views have consequences that do not obtain when the discussion is hidden within academic institutions Brock (1987) makes a similar comment about the role of philosophers in making social policy. He argues that gthe virtues of academic research and scholarship that consist in an unconststrained search for truth, whatever the consequences, reflect not only the different goals of scholarly work but also the fact that the effects of the scholarly endeavour on the public are less direct, and are medicated more by other institutions and events, than are those of the public policy process. . . when philosophers move into the policy domain, they must shift their primary commitment from knowledge and truth to the policy consequences of what they do.h Brock, gTruth or Consequences: The Role of Philosophers in Policy Making,h

[14] Lagerspetz, Olli and Backstrom, Joel. gThe Grammar of Community.h Research Project 1998-2000, Department of Philosophy, Abo Akademi University, Finland. Accessed: October 17, 2002. Available at http://www.abo.fi/fak/hf/filosofi/research/The_Grammar_of _Community.doc

[15] Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,": 787. following Oliver, "Changing the Social Relations of Research Production,".

[16] See Jerome Edmund Bickenbach et al., "Models of Disablement, Universalism, and the International Classification of Impairments, Disabilities, and Handicaps," Social Science and Medicine 48 (1999).

[17] See Ibid.

[18] Erik Parens and Adrienne Asch, "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations," The Hastings Center Report 29, no. 5 (1999).: S15. See also Adrienne Asch and Eric Parens, eds., Prenatal Testing and the Disability Rights Critique (Washington: Georgetown University Press, 2000).

[19] Parens, Erik, and Adrienne Asch. "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations." The Hastings Center Report 29, no. 5 (1999): S1-S22.

[20] Ibid.

[21] To its credit, the work of Parens and Asch proceeds from such consultation, as does excellent research by Ward: if persons with disabilities are inadequately consulted, among these individuals, those with learning difficulties are even less likely to be have the opportunity to express their viewpoints. Ward's research is notable for considering these in view of prenatal testing. See Parens and Asch, "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations,".; Ward, "Whose Right to Choose? The 'New' Genetics, Prenatal Testing and People with Learning Difficulties,".

[22] Moore, Beazley and Maelzer (1998) state that gother than the need for critical reflection, and for unswerving commitment to making human rights issues explicit, we cannot pinpoint what the essential ingredients of good disability research are . . .we can, however, begin to say from experience what good disability research is not like..h Moore, M, S Beazley, and J Maelzer. Researching Disability Issues. Edited by L Barton, Disability, Human Rights & Society. Buckingham & Philadelphia: Open University Press, 1998.

[23] See Ward, L, Joyce Howarth, and J Rogers. "Difference and Choice: Exploring Prenatal Testing and the Use of Genetic Information with People with Learning Difficulties." British Journal of Learning Disabilities 30 (2002): 50-55.

[24] The Questionnaire was piloted at "Genetics & Disability: Exploring Different Spaces, Different Futures." Brisbane, Australia 2002. (n=50) The following study was conducted online with a broad sample of Australian disability organizations (n=100). The research was conducted with Dr. Lynn Gillam, and is part of a larger project funded by the Australian Research Council entitled gDoes Prenatal Diagnosis Discriminate Against People with Disabilities?h

[25] F.J. Leavitt, "Bioethics Surveys and the Quantification of Ethics," in Bioethics for the People by the People, ed. Darryl Macer (Eubios Ethics Institute, 1994): 174-176.

[26] Pursuing a more participatory approach with persons with disabilities might help bioethicists avoid using inaccurate examples in making their case. These can have lasting impacts on views toward these thinkers. Perhaps the best example of this is a quote of Singer's that continues to receive a great deal of press in disability circles, even though he has publicly admitted that it is highly inaccurate: gwe cannot expect a child with Down Syndrome to play a guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete or basketballer or tennis player.h Peter Singer, Rethinking Life and Death: The Collapse of Our Traditional Ethics. New York: St. Martin's Press.

[27] Bricher provides an excellent discussion of this in examining the work of Oliver, Felske, and Ward & Flynn. See Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,".; Oliver, "Changing the Social Relations of Research Production,"; AW Felske, "Knowing About Knowing: Margin Notes on Disability Research," in Disability Is Not the Measles: New Research Paradigms in Disability, ed. M Rioux and M Bach (Toronto: The Roeher Institute, 1994); L Ward and M Flynn, "What Matters Most: Disability Research and Empowerment," in Disability Is Not the Measles: New Research Paradigms in Disability, ed. M Rioux and M Bach (Toronto: The Roeher Institute, 1994).

[28] Bringing empirical questionnaires into the domain of one's research may also help avoid harm that persons with disabilities associate with ethical concepts. I argue that it is not so much the use of personhood per se that persons with disabilities fear, but who it is used by: that decisions about the nature and implications of these concepts will be made by others (or those who seem themselves as other) in a disadvantageous manner. This is supported by Bury's (1996) observation that gsome disabled people feel so strongly about the oppression inherent in traditional research that it may be perceived as voyeurism or even rape.h The notion seems to be one of outsiders looking in through their own conceptual lenses like personhood, rather than those lens being constituted and utilized together by bioethicists and persons with disabilities (although I should note that these need not be mutually exclusive categories) Questionnaires can, in both perception and actuality, be a way of allowing persons with disabilities to enter a discussion about which criteria for contestable concepts are privileged, rather than merely being subject to these concepts after they have been mapped out by bioethicists. See M Bury, "Disability and the Myth of the Independent Researcher: A Reply," Disability and Society 11, no. 1 (1996). Cited in Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,": 786.

[29] Bricher (2000) notes that Oliver has recognized that gdespite his disabled status, and his contribution to the disability movement, he is still the main beneficiary of his own work.h In view of this consideration, he and other theorists such as Ward & Flynn have noted that acknowledging this fact is an important step for moving towards a more participatory research model. See M. Oliver, "Changing the Social Relations of Research Production," Disability, Handicap and Society 7, no. 2 (1992); Ward and Flynn, "What Matters Most: Disability Research and Empowerment,". Cited in Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,"

[30] Bricher (2000) notes that many persons with disabilities feel that researchers are often motivated to pursue research more for their own gain than for improving the day to day lives of persons with disabilities. Ibid.

[31] M Oliver "Changing the Social Relations of Research Production." Cited in Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,",: 786

[32] See Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,",: 790. following B.J. Gleeson, "Disability Studies: A Historical Materialist View," Disability and Society 12, no. 2 (1997).; C Bochel and H Bochel, "Researching Disability: Insights from and on the Social Model," International Journal of Rehabilitation Research 17 (1994).

[33] C Barnes, "Qualitative Research: Valuable or Irrelevant?," Disability and Society 10, no. 3 (1992). Cited in Bricher, "Disabled People, Health Professionals and the Social Model of Disability: Can There Be a Research Relationship?,",: 789.

[34] Bickenbach et al., "Models of Disablement, Universalism, and the International Classification of Impairments, Disabilities, and Handicaps,". See also I.K. Zola, "Aging and Disability: Toward a Unifying Agenda," Educational Gerontology 14 (1988).

[35] For a good discussion of slippery slope arguments in the context of prenatal testing see Lynn Gillam, "Prenatal Diagnosis and Discrimination against the Disabled," Journal of Medical Ethics 25, no. 2 (1999).

[36] Parens and Asch, "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations,".

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