WHAKAPAPA, GENEALOGY AND GENETICS

WHAKAPAPA, GENEALOGY AND GENETICSbioe_1850 182..190

DONALD EVANS

Keywordswhakapapa,whanau,genealogy,genetics,genetic curiosity,personal identity

ABSTRACTThis paper provides part of an analysis of the use of the Maori termwhakapapa in a study designed to test the compatibility and commensura-bility of views of members of the indigenous culture of New Zealand withother views of genetic technologies extant in the country. It is concernedwith the narrow sense of whakapapa as denoting biological ancestry,leaving the wider sense of whakapapa as denoting cultural identity fordiscussion elsewhere. The phenomenon of genetic curiosity is employed tofacilitate this comparison. Four levels of curiosity are identified, in the Maoridata, which penetrate more or less deeply into the psyche of individuals,affecting their health and wellbeing. These phenomena are compared withnon-Maori experiences and considerable commonalities are discoveredtogether with a point of marked difference. The results raise importantquestions for the ethical application of genetic technologies.

INTRODUCTION

Does genetics tell us who we really are? Does it tell uswhat we really are? To what degree does the informationprovided by our genetic profile determine our health andwellbeing? The results of a recent comparison of Maoriand Pakeha1 views of the development of genetic tech-nologies and their application raised such questions andfacilitated some important insights into possible answers.The employment of the concept of whakapapa in Maorithinking about genetics was an important focus of theseissues. The use of this traditional concept in the study willbe compared with the use of the idea of genealogy inPakeha culture. Some attempted definitions of whaka-papa use genealogy as the closest approximation.2

Though we shall note that this definition is an oversim-plification, biological relations are, nevertheless, a veryimportant element of the concept.

The examination of uses of these two terms in discus-sions of genetic technologies in New Zealand offered theopportunity to explore commonalities as well as differ-ences in Maori and Pakeha perceptions of the technolo-gies, with a view to informing policies in healthcareprovision.

METHODOLOGY AND EVIDENCE

The project

The evidence examined in this paper was gathered in aproject set up to compare Maori views of emerging healthtechnologies with other views extant in New Zealand.3

The Maori data were gathered by Maori researchers4 byuse of interviews with a wide variety of groups of Maorirespondents broadly representative of Maori culture.5

Ethics Committee permission was obtained to gather the

1 Pakeha is a term which refers to New Zealand people of Europeandescent.2 See for example: J.Patterson.1998. People of the Land: a Pacific Phi-losophy. Palmerston North, NZ: Dunmore Press: 18; and C. Royal.1998. Matauranga Maori: Paradigms and Politics. Paper presented tothe New Zealand Ministry of Research, Science and Technology: 4.

3 The project was funded by the Foundation for Research Science andTechnology and ran from 2003–2009.4 The researchers belonged to Te Pumanawa Hauora (The ResearchCentre for Maori Health and Development at Massey University, NewZealand).5 The interviewees were members of cohorts of participants regularlyconsulted by the Massey University Maori research unit. They ranged

Address for correspondence: Prof. Donald Evans, University of Otago Bioethics Centre, Medical and Surgical Sciences, PO Box 913 Dunedin 9054,New Zealand. Email: [email protected] of interest statement: No conflicts declared

Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/j.1467-8519.2010.01850.xVolume 26 Number 4 2012 pp 182–190

© 2010 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.

data and for it to be analysed by ethicists from theDunedin School of Medicine. The interviews were semi-structured and a verbatim record was transcribed for thepurposes of analysis.

The analysis of the interviews was effected by use ofInterpretive Phenomenological Analysis (IPA).6

The nature of social concepts is best grasped by anexamination of their use in the context in which theyflourish rather than by means of dictionary, academic orpolitical definitions. In order to contextualize Maori per-ceptions accurately, the interviews with Maori partici-pants were conducted by interviewers who identifiedculturally with the participants. Their interviews weredesigned to enable the participants to express their reac-tions to various genetic technologies and to enlarge wherepossible on the grounds for these reactions. The resultsdemonstrated that two individuals from within the sameculture might react quite differently to a specific technol-ogy, depending on their individual circumstances and lifeexperiences. This was a confirmation of Smith’s claimsfor the usefulness of the methodology.

If one is interested in exploring the process of howindividuals work through dilemmas invoked by thepossibility of involvement in genetic testing pro-grammes . . . , qualitative research comes into its own.By eliciting autobiographical documents or conduct-ing semi-structured interviews, one may be able toobtain a richer account of how the person is thinkingabout, and dealing with, complex health-relatedquestions.7

The analysis

The analysis of the interviews employed IPA techniques.General themes emerged from a detailed case-by-casereading of the transcripts such as the common but variedemployment of Maori terms and their use in discussingapplications of genetics in plants, animals and humans.Connections across cases produced a set of ‘superordi-nate themes’.8 Two of these involved the employment of

the concept of ‘whakapapa’. The first concerned its use inrelation to biological relationships and identity and thesecond its use in relation to cultural relations andidentity.

GENEALOGY, WHAKAPAPAAND GENETICS

Genealogy is a central notion in genetic technologies.Thus the definition of the concept of whakapapa in termsof genealogy suggests an intimate relationship betweenthe concept and genetic profiles. The responses of partici-pants demonstrated, however, that the idea of whaka-papa is used to refer both to biological ancestry and to therelations between people and other species, places,events, things and to the gods. Both sets of relationshipsare important in the determination of the identity ofMaori persons. It immediately becomes clear that each ofthese features is relevant to the discussion of genetics andits applications amongst Maori. The extended use of theterm is a matter for discussion elsewhere. In this paperwe shall concentrate on the matter of biologicalrelationships.

GENETIC CURIOSITY

Let us begin by translating the theme of whakapapa asgenealogy into a series of narrative accounts by employ-ing verbatim extracts from the Maori participants. Ineach case we shall compare these accounts with othersfrom Pakeha society. Despite the reservations expressedabove about the usefulness of definitions to extend under-standing, it would be foolish to deny that this idea formsan important strand in Maori thinking about whaka-papa. The definition does not arise out of nothing.

Once the notion of genealogy is on the agenda nowa-days the idea of genetic profiles is not far away. Here, itmay be thought, we have a technology which enables usto procure hard objective and even definitive evidence ofour ancestry. All that we have taken to be true of who weare from knowledge of those who have reared us andfrom oral histories might be shown to be the lie it is bymeans of this technology. We now have a label for alonging which many people shared before the advent ofDNA genetics, viz. genetic curiosity. This curiosityranges from a relatively shallow kind of interest in theidentity of one’s forbears through interests which go deepin the psyche of individuals to interests which are nowa-days regarded as crucial to one’s health and wellbeing.How do these interests figure in people’s lives and do theyvary between Maori and Pakeha? Consider someexamples of this curiosity.

from Kaumatua (Maori elders) to Ragatahi (Maori youth) and a genderbalance was preserved as closely as possible. Interviewees satisfied avariety of descriptors including urban/rural, professional/semi-skilled,homeduties, beneficiary, manual worker, student, scientist, healthcareworker, self-employed. A large majority identified as solely Maori andthe remainder as part Maori or New Zealander.6 The author noted that this methodology had been used successfully inresearch on psychological and social issues in genetics. See: ElizabethChapman & Jonathan A. Smith. Interpretive Phenomenological Analy-sis and the New Genetics. J Health Psychol 2002; 7: 125–130.7 Jonathan A. Smith. Beyond the Divide between Cognition andDiscourse: Using Interpretative Phenomenological Analysis in HealthPsychology. Psychology and Health 1996; 11: 265.8 Ibid; see also Chapman & Smith, op. cit. note 6, p. 127.

Whakapapa, Genealogy and Genetics 183

© 2010 Blackwell Publishing Ltd.

Who were they?

Ignorance of one’s ancestors can be intriguing. Where didthey come from? How did they look? What kind of voicedid they have? How tall were they? Evidence gained frompublic record offices, censuses and registers of births,deaths and marriages often leave uncertainties of biologi-cal connections. But no such doubts would remain if wehad the genetic profiles of the candidate forbears. Thekind of search is becoming something of a sport in theemployment of DNA testing.

Last May, American Tom Robinson, a professor ofaccountancy at the University of Miami, made anunexpected discovery. He had been researching theRobinson family tree and – if his DNA paternity testresults were to be believed – found that he was adescendant of Genghis Khan, the 13th-century Mongolwarlord, the right-winger’s right-winger.

‘I’ve headed accounting groups,’ said the bashful pro-fessor, ‘but I’ve done nothing as big as Genghis Khan.’One likes to imagine him dining out on the tale in steakhouses in downtown Miami, sending a little shiver ofexcitement down the spines of his listeners – ‘Tom, youold devil! We had no idea.’9

So engaging is this level of curiosity that one Geneticsexpert has set up a business to satisfy the market for it.

There’s a streak of hidden mischief in the psychologi-cal make-up of Prof. Bryan Sykes. He is professor ofhuman genetics at Oxford University, and a quick scanof his curriculum vitae reveals everything you’d expectfrom a fully paid-up member of the tweedy donbrigade.

His research showed that DNA could survive inancient bones, and then involved him in checking thegenetics of people claiming to be from the Russianroyal family, as well as those of the long-dead Ice Manand Cheddar Man.

But Sykes is an entrepreneur as well as a serious playerin academia – an environment where some still viewstarting a business as an act of Promethean rebellious-ness. In 2000, he founded a company that allowspeople to trace their ancestry back through their DNA.

Oxford Ancestors is a growing business turning over£1m per year, up tenfold from its first year. Herecounts with evident glee the unusual staff banter inthe environment that he helped create

‘You go into the office and you hear them say thingslike “We’ve got a couple of Genghises in thismorning”,’ he laughs.10

Yet for others even this relatively shallow level of curi-osity means a good deal more where the anonymity of theprogenitor leaves unanswered questions about theirphysical appearance, the nature of their voice, their loca-tion and life story, their reasons for their disappearanceout of their child’s life which is regarded in many cases asrejection and abandonment. It meant more to a manwhom we shall call Jim for the purposes of this paper. Hewas not in ignorance of the reasons for his abandonmentby his father but all the other issues engaged his curiosity.His surname was Jones, by far and away the most com-monplace name in his home country of Wales. Whilestudying in London he asked a fellow student to searchfor a man named Jones, his biological father. Herecounted how when he was just past three years old hesaw his father for the last time. He had arrived back at thefamily home from active service in the war and steppedover his son to enter the house. Upon discovering withinminutes the infidelity of his wife he stepped over his sonand left forever. Jim’s last memory of him was of a manin military uniform striding quickly down the street. Nowan adult, he wanted to meet the old soldier. Incredibly thesearch was successful and a meeting was arranged. Theencounter was a huge disappointment to Jim. Hedescribed his father as short, rude and overbearing. Hehad no further interest in him and he never wanted to seteyes on him again. Yet he insisted that he was pleased tohave met him for he no longer wondered what he lookedlike, how he sounded and so on. His curiosity hadreached no deeper than that. Had he been ignorant of hisfather’s reasons for leaving then his case would have beennearer to a later case we shall discuss, for it could wellhave had negative implications for his health and wellbe-ing. In his case, his curiosity was totally satisfied by hisbrief encounter.

There are echoes of this shallow level of curiosity insome of the Maori comments about genetics and whaka-papa. Some interviewees were very aware of the possibil-ity of tracing ancestry back many generations by meansof genetic technology. However the very distant genea-logical links, though interesting, were not very significantfor them. For example when HR8 was asked to respondto the possibility of researchers using genetic informationto provide scientific insight into individual and iwi (tribe)whakapapa the reply was:

9 M. Davidson. 2006 Tracing your Genetic Journey. http://www.telegraph.co.uk/health/3344612/Tracing-your-genetic-journey.html[Accessed 2 Aug 2010].

10 M. Baker. ‘Curiosity drives the gene genie to a £1m turnover’ http://www.telegraph.co.uk/finance/2784361/Curiosity-drives-the-gene-genie-to-a-1m-turnover.html Last Updated: 11:21PM GMT 15 Feb 2008.[Accessed 2 Aug 2010].

184 Donald Evans


Um I actually like that! I’d like to know more aboutmy whakapapa, maybe not names, that would bealmost impossible but you know for access to whereour origins are (I would) find that extremely enlight-ening and I think that would be kind of great.

AR11 reacted similarly but in more detail to the sugges-tion that genetics could throw light on the nature ofwhakapapa:

I know some of us are interested in like followinggenetics back to origins like the recent one is they’reable to track Maori genetics back through Taiwan,back through into Asia, that’s the latest one. It’s veryinteresting.

I think it’s interesting and more than likely it wouldhelp corroborate some of the traditions that we’vemaintained over the generations. But it’s more of aninterest than anything, it’s not much more as such.

AR 9’s curiosity, whilst still rather general, was more likethat of Jim Jones. He needed more flesh on the idea of theidentity of his progenitors for the notion of whakapapa toapply:

Yeah as in they traced our genetics back to the indig-enous people of Taiwan. But apart from that it allseems a little abstract because it’s not going to tell youthat your great, great, great, great grandmother wassuch and such, who lived at such and such. And myunderstanding of whakapapa is that it’s about buildinglinks. So you have got this whole branch after branchof your whakapapa and you choose who to acknowl-edge at which particular point of a hui or wherever youare to make connections with other people aroundyou. So its not just about this person and I am statis-tically descended from da-da-da. Its about saying thatI am this person and I am descended from these peoplehere and they link in with you from these other peoplehere and through this place . . . and that can’t tell meany of that. So it’s kind of like ‘Yeah it could tell youthat generally you fellas are from this area’ but itdoesn’t actually help me in much of a concrete way. Itdoesn’t help me in what I see the use of whakapapaas. . . . I am not actually quite sure why the Taiwanthing interests me so much.

At this level of curiosity it would seem that the range ofreactions to genetic testing to determine ancestry are verysimilar between those who employ the term whakapapato locate its significance and those who use the wordgenealogy. It certainly does not seem to find a foothold inclinical practice where the privacy of patient informationis jealously protected. Thus to consult clinical geneticiststo satisfy such curiosity by reference to patient records isunthinkable, even though the literature reveals thatgenetics clinics uncover serendipitous information con-

cerning presenting patients’ mistaken beliefs about theidentity of their fathers in anything from a conservative4% to well in excess of 10% of genetic tests in families.11

Divulging this information for such trivial reasons unre-lated to health cannot be justified. Yet, as we shall see,mistaken paternity can relate to health issues whichbrings respect for privacy into question.

To whom do I belong?

There is a curiosity which figures in the lives of peoplewho wish to know the identity of their forbears whichgoes much deeper in their psyche than a mere amusementor passing interest. It arises out of an ignorance whichprofoundly affects the state of mind and the wellbeing ofthe curious. Though not a new phenomenon stimulatedby the advent of genetics, it is one which could beaddressed by it. It has been prominent in the reform ofadoption laws in numerous countries, where the anonym-ity of the biological parents of children has been chal-lenged and authorities have moved to a policy ofopenness, by means of which adoptive children areinformed of their adoptive status and of the identity oftheir genetic parents, where possible. This facilitates pos-sible contacts and engagement in biological family rela-tionships for the adopted child.

This curiosity is not simply a longing to know some-thing. It is more the desire for a sense of belonging. Theknowledge which provides such support for those whofeel themselves to be orphaned souls, despite the love ofsurrogate families, goes beyond just knowing the identi-ties of biological parents. Whilst not all adoptive childrenfeel this need, evidence shows that very large numbershave done, hence the changes in adoption laws.

Consider the case of Eliza, as we shall refer to her. Sheknew her birth mother during the very early years of herlife. She died, a suicide, when the child was five years old.The father took his young son and emigrated, leavingEliza with a family who took her in and brought her upwithout formally adopting her. She grew up, married at ayoung age and became the mother of five children. Yetdespite the fact that she was now surrounded by her ownblood relations, to whom she was devoted, she oftendescribed her sense of aloneness in the world. Her surro-gate parents had never discussed her background withher, nor the reasons why they, rather than some other

11 Some examples of papers from science and bioethics literature affordsome insight into these matters. See, for example: Lainie Friedman.Disclosing Misattributed Paternity. Bioethics 2007; 10(2): 114–130; C.F.Sing et al. Studies on Genetic Selection in a Completely AscertainedCaucasian Population II. Family Analysis of 11 Blood Group Systems.Am J Human Genet 1971; 23(2): 164–198; Mark A. Bellis, KarenHughes, Sara Hughes & John R. Ashton. Measuring Paternal Discrep-ancy and its Public Health Consequences. J Epidemiol CommunityHealth 2005; 59: 749–754.



family, had taken on the responsibility of rearing her. Shecalled them Uncle and Aunt and they lovingly cared forher together with their own daughter. Yet she alwaysasked herself why they were doing this. It was not aquestion she asked about the couple’s daughter for theanswer to that question was obvious.

Late in life, when the Uncle and Aunt and theirdaughter had long since died, the ignorance which hadexercised her in her youth still troubled her. She sus-pected that there were blood ties between them andherself but was never able to establish the facts. Shedied at ninety years of age and in her last days this wasthe one thing she wanted to talk about. ‘If only I hadknown that I belonged in the family it would have madeall the difference to me.’ Knowledge of this relationshiphas subsequently surfaced due to the computerizedrecords available for family tree research. Maybe suchknowledge provided late in her life would have createdother emotions which would have intensified her senseof isolation but awareness of these ties in her youthwould almost certainly have been beneficial to her stateof mind and might well have informed the life decisionsshe made. But families did not share such dark secretsin her society.

There is evidence of this same need of a sense of bio-logical belonging in the responses of the Maori partici-pants in the study. AR11 was asked some questions aboutreproductive technologies and whether genetic parentagewas important as opposed to adoptive parentage. Hisreply was enlightening with respect to the kind ofproblem with which Eliza had to deal.

I thought . . . about fertility and the whole process thatpeople go through to have children. I’m just wonderingif we get a bit too caught up on the concept that wehave to have children ourselves, which is obviouslynatural. That’s where I like the Maori way. When theold people were infertile it wasn’t a big issue becausethe society was such where you could easily havesomeone else’s child in the whangai relationshipbecause it’s part of the same kinship group and there-fore had the same whakapapa. So it didn’t matterwhether it was your child biologically but it was goodenough that they were a close relative of yours.

When asked about the strong drive to produce their ownoffspring AR11 responded:

Yeh, but if that wasn’t the case then an extremelyacceptable practice was to adopt, well not adopt butwhangai. That’s the Maori concept of adoption.

What was hidden from Eliza cannot, in the traditionalcourse of things amongst Maori, be hidden. Even if theidentity of a birth mother is unknown, the child knowsthat he or she is amongst family. The children have nosense of abandonment or isolation but, contrarily, know

themselves to be family members. Eliza’s surrogatefamily was part of her genealogical family but, given thevery different traditions of adoption and fostering in herday, this was not something which she was entitled toassume.

Given the possibility of such a concealed genetic rela-tionship surfacing in the course of clinical genetics con-sultations, what should a responsible clinician beexpected to do? Cases of this sort present tensions forthe clinician which are absent in the cases of ignoranceof paternity mentioned above. Here obligations of carecome into direct conflict with the obligation to protectprivacy. It would be unsafe to assume that in all casesprivacy should triumph. On a case-by-case basis, the cli-nician is called upon to make the difficult judgement ofwhether the harms suffered by the patient through igno-rance of these genetic relationships outweigh the likelyharms resulting from a breach of privacy.

What am I made of ?

DNA genetics offers us the possibility of uniquely deter-mining the personal identity of individuals. The issuewhich most exercised Maori respondents in this connec-tion concerned the rights of access to their whakapapaand the uses to which such genetic data might be put.These concerns are also of concern to Pakeha. Problemsabout personal privacy and genetic data are receivingclose attention by the Privacy Commission in NewZealand. They are pressing issues because of the nature ofgenetic data itself and are accentuated by the availabilityof electronic data storage and communication. The factis, of course, that while a patient’s genetic data might bethought to be the most personal of all information it is,simultaneously, also information about others than thepresenting patient. This can cause difficulties within fami-lies where, for example, patients might not wish to givepermission for their treating physician to approach sib-lings for genetic testing to enable them to avoid similarhealth problems to their own. In New Zealand the HealthInformation Privacy Code frees a clinician from the dutyof confidentiality when the health information of apatient constitutes both a serious and an imminent threatto the health of others. Establishing each of these featurescan be difficult. In genetics the latter is especially prob-lematic. In view of the nature of genetic information asinvolving shared characteristics with family members,should the possibility of offering such tests be a require-ment? Should not genetic relatives be entitled to suchoffers of testing? The jury is still out on these complicatedquestions.

Maori respondents were interested in genetic researchinvolving families. The celebrated study of the discoveryof a genetic mutation causing Otopalatodigital Syndrome

186 Donald Evans


in a Maori family in Queenstown12 and a similar successstory, involving the identification of the genetic cause of aform of gastric cancer amongst a Maori population inTauranga, are prime illustrations of the research. Each ofthese studies teaches us a good deal about the inviolabil-ity of whakapapa in terms of whose knowledge it is andhow important it is in the lives of Maori.

In the latter study, between 1995 and 1997 work wasdone with 105 volunteers from a family to identify thegene responsible for a 70% incidence of cancer in familymembers between the ages of 14 and 30 years.13 Thewhakapapa of these volunteers was examined and it wasdiscovered that the disease was unique to a population ofMaori and Scottish descent.

In the former study the family was one in whichnumbers of the female members carried a gene which ledto the very early death of male children born to them. Thematriarch of the family had lost one son in these circum-stances but between them her four daughters had lostseven baby boys in this manner. The family came tobelieve that they were subject to a makutu (curse). Yettheir desire to perpetuate their whakapapa did not dimin-ish. As one populist account of Robertson’s remarkablediscovery of the gene responsible for their tragediesexpresses this drive:

Yet in this family, where whakapapa is so essential,despite the possibility of further grief, healthy childrencontinued to be born including three precious, unaf-fected boys.14

The identification of the genetic mutation which causesOtopalatodigital Syndrome denoting various skeletal andorganic malformations incompatible with life has trans-formed the outlook of the family. They no longer feel theneed for guilt or blame for the phenomenon. All thegranddaughters of the family can be tested for the muta-tion and although 50% of them are likely to carry it, theyare enabled to plan their families in the light of the knowl-edge. They do not have to fear such tragedies as thoseendured by their mothers and grandmother.

The emotional and physical benefits of such knowledgeenjoyed by these Maori families are also to be found withreference to other health conditions such as Hunting-don’s Chorea and breast cancer in non-Maori families.As a result of these outcomes many of the Maori respon-dents in our study reacted positively to this type of

research into whakapapa but all who did were careful toexpress views about proper ways of proceeding with suchresearch. Indeed the two studies mentioned aboveprovide excellent models for addressing these concerns.

One of the expressions of support for genetic testing infamilies, the exploration of whanau (family) whakapapa,was particularly moving. GP19 had been diagnosed witha terminal disease and died less than a week after theinterview. For him these were not hypothetical possibili-ties but realities. When asked how he made decisionsabout the applications of genetic technologies he replied:

I guess at the end of the day it’s all about whakapapato me. It’s all about Whanaungatanga and its all aboutKaitiakitanga (guardianship) and how we protecteverything that we do. But what would be the rulingaspect for myself is whakapapa. I would not want tosee my whakapapa torn up or misused in any way. AndI believe that from a risk management side there maybe potential for those kinds of risks, and so protectingwhakapapa, which is at the end of the day protectingmy whanau.

How do you feel about taking the genetic test?

I actually think that it is a good thing myself. Themany times that I have looked at this scenario I thinkit has so much potential to benefit our families, tobenefit our whakapapa and the historic knowledgethat we can get from something like this. When I lookat diseases such as MS and Huntingdon’s, anythingthat is going to help us find out our potential andwhether we carry those, and even more so with coloncancer, which is what I suffer from myself, and diabe-tes and so forth . . . I actually think (in) a lot of thescenarios this comprehensive genetic testing is a verygood thing.

Would you have taken the test 10 years ago?

Yes I believe I would have, being such an open mindedMaori – and that’s what we are, we are sponges welearn, we take in anything that comes our way and Ibelieve not to speak for all Maori but I would believethat we are very open to these new discoveries andthese new ways that could potentially benefit ourselvesand our families and our whanau. So, yes.

GP4 expressed some reservations in his solid support forthe same when asked for a response to the followingscenario: Researchers want to use the genetic information(from a blood sample) . . . which will provide insight intoindividual, whanau and iwi whakapapa. His reply was:

. . . Some families may find it imposing on theirprivacy. But if the family themselves had a generalwant to find out, especially if they had lots of death inthe family and it seems to be on a similar line but

12 S. Robertson et al. Are Melnick-Needles Syndrome and Oto-palato-digital SyndromeT II Allelic? Observations in a 4-generation Kindred.Am J Med Genet 1997; 71: 341–347; S. Robertson et al. LocalizedMutations in the Gene Encoding the Cytoskeletal Protein Filamin ACause Diverse Malformations in Humans. Nature Genet 2003; 33: 487–491; P. Stirling. 2003. The Lost Boys. Listener 7 June: 26–29.13 P. Guilford, J. Hopkins, J. Harraway et al. E-cadherin GermlineMutations in Familial Gastric Cancer. Nature. 1998; 392: 402–405.14 P. Carey. The People’s Professor. North and South March 2005; 74.



unknown, you think that it would only be to theirbenefit to resolve it. But again it is a personalthing.

GP5 responded to precisely the same question with greatenthusiasm,

Cool. Absolutely exciting.

but in response to the succeeding question Do you thinkresearchers have got a right to look into our whakapapa?added a crucial qualification:

No. Everything has to be done with consent, abso-lutely without question. But if anybody is interestedand prepared then I think it will be very exciting.

But is it enough for anybody to be interested? Mightnot everybody need to be interested?

GP8 explicitly referred to the notion of a family deci-sion with respect to discovering whanau whakapapa andhinted at the difficulties in regarding genetic data as per-sonal information. He was presented with the followingpossibility. You know that you are a carrier of Hunting-don’s, which is pretty nasty. There’s a 50% chance thatmaybe you could pass that onto your children . . . Wouldthat stop you from having children? His reply was:

I think so, but again the Maoriness in you would playhavoc, the line and . . .

The whakapapa?

Totally. Because it stops your line. You know youthink of the boys’ line, all of it’s kind of referring backto whakapapa really.

So what’s the biggest thing about whakapapa . . . youwant to continue your whakapapa?

For future generations yeh. Or do you want to stop it?It depends on what you and your family want to do. Ifyou are all carriers or whatever, as a family you need toget together and decide what is to happen.

So you think it’s a whanau decision don’t you really,rather than a personal decision?

Yeh.

Others reiterated this important idea, such as GP13 whothought that genetic research into whanau and iwiwhakapapa was a good idea if:

. . . your iwi and whakapapa consent to it. It’s got to bea collaborative thing.

Further respondents demanded more safeguards thanwhanau consent. They were concerned with the access tothe results of the research, embodying concerns aboutprivacy, and the uses to which they were put. In answer to

the question: Who should have access to that informa-tion? GP 16 replied:

Whanau involved. The ones that gave their consentand given their blood.

Similarly GP12 was ‘quite happy’ with investigations intowhanau and iwi whakapapa with the qualification:

. . . provided that they have consent and that theywould remain between the whanau hapu and iwi andresearchers.

Each of the studies mentioned satisfied these demands.All the personnel involved consented to be part of thestudy. In the Queenstown case all the women in thefamily opted into the study and provided constant stimu-lation and encouragement to the researchers throughoutthe seven years of complex, and sometimes disheartening,detective work. It was a wholeheartedly collaborate activ-ity. This was also true of the prospective gastric cancersufferers. That piece of research was in fact initiated bythe whanau and proceeded as a result of a partnershipbetween the Kimihauora Health Centre and the respec-tive universities in terms of which both the ownership ofthe genetic knowledge and its confidential character werejealously safeguarded.

With respect to this level of genetic curiosity there islittle difference between Maori and Pakeha views. Whilstit is true that Pakeha people, nowadays at least, do notenjoy the same opportunities to live in the context ofextended families nevertheless the welfare of the familiesin which they do live is of prime importance and therights of individuals in those families to seek or refusegenetic information about themselves are to be protected.The use of their health information is also subject to strictrules of respect and it cannot, without their consent, bedivulged freely to others nor used for any purposes otherthan those for which it was collected without theirconsent. The Health Information Privacy Code applies toall New Zealanders and these protections are importantto Pakeha citizens. In both sets of citizens there arepeople who would rather not be subjected to genetic testsand the information offered by them whereas there areothers who will.

Very difficult problems arise for genetics familyresearch and treatment where both willing and unwillingmembers coexist. It is in these cases that clinicians havedifficult judgements to make, similar to that referred inour previous section. In these cases the tension to beresolved is that between the cost of breaching theprivacy of family members who do not want investiga-tions into their genetic character on the one hand andthe health benefits such investigations might afford tothose members who might be deemed to need andwould probably desire such information on the other.

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Such was the case in the first dilemma in genetics testingpresented to the author for discussion in a genetics insti-tute more than twenty years ago. A woman had givenbirth to a child who suffered from a serious geneticdisease. Clinicians were keen to test her young sisterwho might carry the same mutation. They were refusedpermission to approach her on the basis that the patientso disliked her sibling that she hoped she would sufferthe same fate. In those relatively early days of clinicalgenetics such a refusal was seen as an insurmountableobstacle to provide care for the sister, yet the clinicianssuffered guilt for failing so to do. Little clear guidancehas emerged over the intervening years for resolving thiskind of tension; yet resting with the prohibition on thegrounds of privacy and the patient’s ownership ofgenetic information fails to recognize that genetic infor-mation is not straightforwardly information about pre-senting patients alone and is, in this sense, not private tothem.

Who am I?

The final level of curiosity which emerged as significantin the research project concerned the difficulties ofknowing oneself produced by ignorance of one’s imme-diate ancestry. This difficulty was not simply aboutadequately locating oneself in a social setting nor aboutknowing a great deal about one’s susceptibilities to spe-cific health problems. Rather it was about understand-ing the kind of person one is, one’s interests, personalitytraits, abilities and so on. These are the features whichmake us the persons known by others rather than thebodies they recognize and, perhaps more importantly,the persons we see ourselves to be. It is the kind ofknowledge referred to in the injunctions ascribed toPythagoras ‘Know thyself’ and to Shakespeare in hisspeech of Polonius to his son:

This above all: to thine own self be true,And it must follow, as night the day,Thou canst not then be false to any man.15

Ignorance of this kind has probably produced the great-est strains in adoptive relationships causing pain both toadoptive parents and children. The point is beautifullyillustrated by the case of a man we shall call John.16

John played an important role in the move to openadoption in the amendment of the Adoption Act in

New Zealand. He was an adopted child and wasbrought up by loving adoptive parents who werefarmers. He was raised in rural New Zealand. As a childhe was aware of his adoptive status. He is greatly appre-ciative of the love which his parents showered on himbut recounts how a deep unease developed in his mindas he grew up. This unease was largely due to hisdemeanour and interests which were not well matchedto his setting. He had no interest in Number 8 wire,driving tractors, mending fences, farm dogs, herding,drenching and shearing sheep. He would much prefer tobury his head in a book. History and literature were hispassions. His parents, neither of whom to his knowledgehad ever read a book, thought this to be most odd andworried that there was something wrong with their son.Was it laziness or was it something worse than that?Was he unwell? They sought advice but the more theyworried the greater became John’s unease for he beganto think of himself as being odd and a misfit. It was atthis point that his efforts began to trace his geneticfather. There was little evidence to go on but with muchdetermination, years of searching and a good deal ofluck the puzzle was resolved. Sadly his father no longerlived. But he was well known. Indeed he had been aman of letters, a professor and the author of numerousbooks and learned papers. This piece of knowledge wasthe key to John’s peace of mind. He was not odd afterall but, rather, a man in his father’s image. At last heknew who he really was.

Despite the assertion by AR11 that the identity ofone’s genetic parents is given too much importance andthat it is kinship relations which really count, someMaori saw knowledge of biological parents as being atleast as important as knowledge of family. GP10 sawlittle point in using genetics to trace whakapapa backmany centuries. But his views about sharing knowledgeof whakapapa in the family were very firm andenlightening:

There are many sides of my family. Well, one side ofmy family my sister asked for that, our whakapapafrom that side, and she was told no. And to me, Iwas quite upset that she had been refused thewhakapapa. Not that I had asked myself, but shewanted to know who she was for her children’s sakeand where she descended from on that line. And itwas very secretive and to me we have the right toknow where we are from and how we are . . . So Ibelieve that whakapapa is there to be shared to your-self and your family. I mean if you don’t know whereyou are from then how can you actually knowyourself?

The kinds of issues John had faced are probably theissues which GP10 believed his sister and her childrenwere facing. Both parents and adopted son laboured for

15 William Shakespeare. Hamlet.16 This person shared his life story in a conference of the Family CourtsAssociation on Adoption and Alternative Birth Technology inDunedin, New Zealand on June 18th 2000. The information is thereforein the public domain but his name is protected in this account as it hasnot been possible to trace him for the purposes of this paper.



many years under illusions about John’s wellbeing andcharacter. These had profound implications for hishealth and wellbeing into his middle years. Geneticcounselling about the impact of genetic inheritance onbehavioural traits, had it been available to him, mightwell have ameliorated these negative affects. Yet eventhis could not be compared to the emancipation pro-vided by knowledge of his genetic father and that man’scharacter and biography. The need for this kind ofsecure knowledge of genetic parenthood is recognized inthe denial of anonymity to donors of gametes in assistedreproduction procedures in most legislatures which haveregulated the practice. Where genetics might assist in thesearches of people like John, it is difficult to accept thatthat such support is entirely outwith the purview of clini-cal care.

CONCLUSION

Research into Maori conceptions of whakapapa as gene-alogy has revealed various levels of genetic curiosity,which are shared more generally with non-Maori people.It has been noted that these can be ordered in a way thatmarks a growing significance of such information in thelives of people with respect to their health and wellbeing.These levels of curiosity call for increasing levels of careboth in the formation of health policy and in the provi-sion of clinical services.

Professor Donald Evans has directed two Bioethics Centres, one in theUniversity of Wales and the other at the Dunedin School of Medicine inthe University of Otago, New Zealand where he was appointed to achair in 1997. He is currently the President of the International Bioet-hics Committee of UNESCO.

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WHAKAPAPA, GENEALOGY AND GENETICS