J Med Genet 1997;34:831-837

Evaluation of a project to enhance knowledge ofhereditary diseases and management

Ian R Walpole, Charles Watson, Diane Moore, Jack Goldblatt, Carol Bower

Genetic Services ofWestern Australia,Agnes Walsh House,King EdwardMemorial Hospital,374 Bagot Road,Subiaco, WA 6008,AustraliaI R WalpoleJ Goldblatt

Faculty ofHealth andBehavioural Sciences,University ofWollongong,Northfields Avenue,Wollongong, NSW2522, AustraliaC Watson

Hereditary DiseaseProgram, HealthDepartment ofWestern Australia,Grace Vaughan House,227 Stubbs Terrace,Shenton Park, WA6008, AustraliaD Moore

Birth Defects Registry,King EdwardMemorial Hospital,374 Bagot Road,Subiaco, WA 6008,AustraliaC Bower

Correspondence to:Dr Walpole.

Received 20 December 1996Revised version accepted forpublication 6 May 1997

AbstractDuring 1992 and 1993, in a designatedsuburban area of Perth, Western Aus-tralia, information on hereditary diseasewas provided for health professionals andthe general community. This informationwas in the form of posters, pamphlets,postal flyers and return letter cards, a

static display, newspaper articles, adver-tisements and radio broadcasts, and pro-fessional seminars. The aim ofthis projectwas to evaluate the effectiveness of com-bined strategies to convey practical infor-mation about hereditary disease to thecommunity and health professionals.Multiple measures of response evaluationwere used, which included structuredquestionnaire surveys of health profes-sionals and members of the communitybefore and after the project. In thecommunity surveys, respondents whowere female, married, middle aged, andparents, and had a higher level of educa-tion or were born in Australia, NewZealand, or the United Kingdom were

generally better informed about heredi-tary diseases. This intervention resultedin only meagre changes in communityknowledge about hereditary disease, even

though promotional materials were shownto be appropriate. General Practitioners(GPs) and Child Health Nurses (CHNs)were supportive of clinical genetic serv-ices and recognised a need for continua-tion ofeducation in this field.There is a rapidiy increasing need for

community and health professional com-prehension of the applications of the newgenetic technology. This project indicatesthat routine educational and health pro-motion strategies will not be enough toachieve desired levels of knowledge andattitude change.(7Med Genet 1997;34:831-837)

Keywords: educational strategies; evaluation; hereditarydisease

Developments in molecular genetics haverevolutionised the practice of clinical genetics.Where previously at risk families could beoffered few options, the advent of new

technologies provides more opportunities forchoice in the prevention of hereditary dis-ease.' 2 Use of these technologies has beenrelatively slow and this is in part because ofcommunity and professional ignorance. Someauthorities believe that a more active approach

to the dissemination of genetic knowledge andthe promotion of services is now required."8

Health professionals have been slow toaccept that genetic health issues are a part oftotal patient care; appropriate genetic infor-mation or referral is frequently only providedwith reluctance or not considered necessary bya medical professional unless a request is madeby the patient.9-"2 Few couples seek pre-pregnancy counselling in relation to geneticissues, a situation likely to change if familiesand people are better informed on inheritedmatters.3 7" The message about hereditarydiseases and their prevention is a relativelycomplex one and health professionals mustchoose between providing very general infor-mation or attempting to give specific detailsabout a large number of rare diseases. Elicitinga family history may require a degree ofbiological and social knowledge that manyhealth professionals and the community do notpossess. It is therefore not surprising thatrecently developed DNA technology for ge-netic testing is currently underused in thehealth care system.13-'6 There is also consider-able misinformation about genetic disease inthe community, often aggravated by inaccuratemedia coverage.

If informed debate about genetic testing andthe potential uses of available DNA technologyis to occur, health professionals and thecommunity need accurate information abouthereditary disease on which to base such adebate. A pilot project was undertaken to testwhether a relatively simple, low cost approachto health professionals and the community,using pamphlets, posters, postal flyers, news-paper and radio items, and professionalseminars, could increase knowledge of heredi-tary disease in the community. The aims of thestudy were to develop promotional materialsand other interventions relating to hereditarydisease; inform health professionals and thecommunity in the target area about hereditarydisease, using the interventions developed;provide a genetic outreach clinic in the targetarea; evaluate attitudes and acceptance of theproject by health professionals; and evaluateknowledge about hereditary disease amongmembers of the community following theabove interventions.The outcomes of the project are described

with discussion on problems related to at-tempts at wide scale population education onhuman genetics and the evaluation of their effi-ciency.

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Table 1 Materials used in hereditary disease project strategies

PilotedlfocusMaterials Distribution * Period of exposure tested

(A) PaniphletsGenetic counselling GP, CHN, P, S/D Throughout NoTesting for birth defects in pregnancy GP, CHN, P March 93 onwards YesWill my baby be born healthy? GP, CHN, P November 93 YesCheck your family tree worksheet (How to draw a

pedigree) GP, CHN, S/D, P, I, HF January 93, throughout YesMaternal serum screening for neural tube defect andDown syndrome GP, CHN, L, P January 93 onwards Yes

Your genetic counselling appointment GP, CHN, P February 93Fact sheet on hereditary diseases GP, CHN Throughout NoWhat do you know about hereditary disease? (table 2) LD Throughout Yes(B) PostersCheck your family tree GP, CHN, L, P January 93, throughout YesWill my baby be born healthy? GP, CHN, P, L November 93 Yes(C) Project information kits for professionalsFolder with log & enquiry details GP, CHN"Facts on hereditary diseases" fact sheet MPrenatal diagnosis bookletGenetic counselling pamphletProject information leaflet

(D) Newsletter Bimonthly x 6 editions GP Alternate months(E) Meetingslseminars GP, CHN July 92-November 93(F) Static display SC, CH Limited

*General practitioners (GP), child health nurses (CHN), pharmacies (P), static displays (S/D), libraries (L), letter drops (LD),media (M), health fairs (HF), shopping centres (SC), council house (CH).

MethodsThis study, called the Hereditary DiseaseProject, was conducted during 1992 and 1993.The target region comprised five adjacentpostcode areas of metropolitan Perth (thecapital of Western Australia), with a totalpopulation of 51 380.

InterventionsPROMOTIONAL MATERIALSPamphlets (table 1), posters (for example, fig1), and information kits for health professionalswere developed. The latter included an outlineof the background and aims of the project, afact sheet on hereditary disease, a prenataldiagnosis booklet (purchased from the NSWGenetic Education Programme), and a geneticcounselling pamphlet. Posters and pamphletswere displayed in participating doctors' surger-ies, child health centres, day care centres,kindergartens, and pharmacies. Newsletterswere sent at regular intervals to all generalpractitioners (GPs) in the target area, updatingthem on the project and including an edu-cational article such as maternal serum screen-ing in each issue.

Static displayA large free standing display was placed invarious public locations in the target area overthe final three week period of interventionstrategies. The display design used a large ver-sion of the illustration from the leaflet Will mybaby be born healthy? (fig 1), with little text andthe project telephone number highly visible.

Newspaper promotionThe project obtained unpaid coverage of itemsof human interest in hereditary disease in thelocal community newspapers during an initialthree week period. This was followed by aseries of three paid full page advertisementsWill my baby be born healthy? (fig 1).

INFORMING HEALTH PROFESSIONALSThere were 45 GPs, five child health nurses(CHNs), three social workers (SWs), 26

regional administrative health officers (includ-ing a community medical officer), and eightpharmacists practising in the target area duringthe course of the study.The Chief Investigator or the Project Officer

or both visited 24 GPs representing the major-ity of practices who had agreed to beinterviewed to discuss the project. All practicesreceived the project information kit and werelater provided with further educational infor-mation for display and patient distribution. Ofthe 24 GPs visited, 17 were willing toparticipate in a "sentinel" role by recording allenquiries by their patients about hereditarydisease matters as well as those patients whomthey saw and who had a hereditary disease.The Project Officer regularly visited CHNs

and they received the project information kit,posters, and pamphlets, attended special in-service seminars, and were invited to makeappropriate genetic referrals through familyGPs or directly to the Genetic OutreachClinics.

Pharmacists were contacted by the ProjectOfficer and provided with posters and pam-phlets for display and distribution.

INFORMING THE COMMUNITY

Direct mail strategiesAll households in the target area received adirect letterbox drop during the course of theproject. Each letter drop included a leaflet,What do you know about hereditary diseases?lKnow your family tree, plus a questionnairereturn mail card with two multiple choicequestions, one about the meaning of the term"genetic disease" and the other about thechance that a baby born in Western Australiahas a birth defect. There were initially fiveseparate mailouts to different subsets ofpostcodes and a sixth repeat mailout to onesubset. Recipients were invited to return thequestionnaire card and slightly different for-mats were used in order to evaluate theresponse rates to each strategy (table 2).

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Evaluation of hereditary disease education

To check if your baby maybe at risk, answer thefolwing question bytickig the boxes.1. Do you or Yes Noyour patnerhave anydisess whichcould be inheied? 0 02. Does a geneticdisease run in your fam"iy(such as cystic fibrosis,haemophdia. Downsyndrome. musculardystrophy) 0g 0

From your famiy heath hStory,a genetic counselor can helpa- your babya risk of- .disa. If

necesry, ot can bedone on paet or teruworn ild, Mostiohanty,genetc co nsel can-e th anxiety people mayexiperience though lack ofinfonnaio abo herediwdase.

3. Doyou havea cth with aserious disseor dsorder?

Yes No

0 04. Are you 35 yearsofage orolder? 0 05. Are you andyour ptnercose reatives(e.g. cousins)? 0 0if you answere yesto one or mre of thsyu ti nS i's mrdporstntthtyou talk to your doctor.I

The HeatDcpartment andGenetc Serices of WstermAustrala at King EdwardMemor Hopi andPrincess Mg Hosplfo Chldon conduct geneticcounse0ng.

If you would ike to know moreab o - counsel .or know soone whomigfa benefts from geneticcounseffing,contct your local doctor

or irng theHe1099 nD se Progrmm

Tel. 222 4272duri office hours.

Counsellin will be conductedby specals doctors andis confidential.

.Ah eeitmg m)wdkfsiashn,.

Figure 1 An example of one of the posters.

Incentives to respond were offered. Thesewere the provision of further information andthe Genetic counselling pamphlet, a Check yourfamily tree worksheet, and entry into the drawfor a pair of jeans.

EVALUATION OF HEALTH PROFESSIONALSATTITUDES TO THE PROJECTThe response and participation of GPs in theproject was assessed by their overall level ofinvolvement. Responses to the newsletters andreplies to questionnaires for feedback onhereditary disease pamphlets, such as that forMaternal serum screening for neural tube defectsand Down syndrome, were also recorded.Finally, a self-administered 23 item question-naire was mailed to general practitioners at thecompletion of the project to ascertain theirattitudes to the relevance of clinical genetics intheir practices and the project to which theycould respond anonymously.CHN participation was assessed by willing-

ness to display project posters and pamphlets,rates of referral of individual families to thegenetic outreach clinics, and by their attend-ance at two genetic inservice seminars.

EVALUATION OF COMMUNITY KNOWLEDGEThe community impact of the project wasassessed by two 15 minute shopping centreintercept surveys in which a structured ques-tionnaire was administered by trained inter-viewers. The first survey was conducted over atwo week period in 1992 immediately beforeany project intervention strategies occurred,and the other was 18 months later at the com-pletion of the project.Measurement of knowledge was based on

questions relating to the definition of geneticdisease, how common birth defects are, abilityto name a genetic disease, ability to name aprenatal test for genetic disease or birthdefects, who might benefit from genetic coun-selling, and where to obtain information onhereditary disease. Information relating to allthese measures was contained in the promo-tional material distributed as part of theproject.

Pre- and post-survey results were comparedusing chi tests and odds ratios. It was decided apriori to examine the data separately for maleand female respondents, as it was felt that theresponse to the project might differ by gender,and to adjust the odds ratios by several poten-tial confounding variables (age, country ofbirth, marital status, education of respondent,and whether respondent had children).Crude and adjusted odds ratios and their

95% confidence intervals were calculated usingmultiple logistic regression (Egret 1993).

Phone lineA dedicated telephone line and answeringservice was allocated to the Project to receiverequests for information.

Genetic outreach clinicsThe purpose of these was to raise communityand professional awareness about the projectand were established in child health centresduring the period of the project. These wereintended to provide easy access to specialistgenetic information and deal with referralsfrom local GPs. Referrals from CHNs and self-referrals were also accepted.

ResultsATTrrITUDES OF HEALTH PROFESSIONALS TO THEPROJECTAt the time of the initial interview, GPs hadindicated that they favoured a fortnightly refer-ral genetic outreach clinic. These clinicsaccepted referrals during the time of theproject so that by its completion they were fullybooked. Each clinic provided three consulta-tions which were most frequently related to theconsultand's own familial risks rather thanmere enquiry about general genetic issues.CHNs were relatively more frequently thereferring agent than other sources.

Will my baby be born healthy?

n ' ' ':' / ? ; ' ' ;i ~ ~~~ ~ ~~ ~ ~~ ~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~.....

amk atpr i.wa

The answer can sometimesbe found by dchdckng yourfamil tre. Many diseaand disorders lend to run infamils. H you're pregnantor plaing a pregnancy,it's IWportant to ask yoursef5 simp questions aboutth risks of it eddisease.

Five Simple Checks

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The attitudes of GPs who were interviewedbefore the launch of the project varied fromrelatively positive to ambivalence or completeuninterest. At three practices the Chief Investi-gator and the Project Officer were unable toarrange appointments for interviews.The 17 sentinel GPs were generally support-

ive throughout the project, but regular collec-tion of data on practice consultation numberswith hereditary disease was discontinued aftersix months because of minimal activity.Of the 45 GPs who were sent the question-

naire at the end of the project, 36 (80%)responded. Eighteen were <40 years and 18were 40 or more years of age. All respondentshad been aware of the project and the majority(24, 67%) thought that the genetic issues raisedwere important. A greater proportion of GPsaged 40 years and over, compared with thoseunder 40 years, thought that the project shouldcontinue (<40 years, 9 (50%); ¢40 years, 15(83%)), and that they would continue todisplay project pamphlets (11 (6 1 %); 14(78%)) and posters in their surgeries (8 (44%);13 (72%)).Thirty-three of the 36 GP respondents

(92%) thought the project had professionaleducational value and that there was a need forfurther genetic education of GPs. All but onerespondent could see a role for GPs in manag-ing patients with hereditary disease, over halfhad referred patients to genetic outreachclinics, and most felt that the genetic outreachclinics should continue (<40,9 (50%); >40, 14(78%)). Only one respondent saw the projectas being anxiety provoking and an invasion ofprivacy.CHNs in the target area remained key

contacts for the duration of the project. Theyfrequently referred patients to genetic clinicseither directly or more often through a patient'sgeneral practitioner, and they distributed anddisplayed project information in child healthcentres as well as contacting communitygroups, such as play groups and child careorganisations.

COMMUNITY RESPONSE TO DIRECT MAIL

STRATEGIESReturn of the mailout questionnaire cardvaried from 1.9% to 8.5%. In the split run sur-veys, the best responses were obtained when aself addressed, reply paid (RP) envelope wasprovided (7.0%), the questionnaire card wasplain rather than colourful and illustrated(4.2%), and when no prize draw incentive wasoffered (8.5%). A request for the age of arespondent did not act as a deterrent (table 2).A population subgroup which received letterdrop No 1 and was part of No 6 where a differ-ent strategy was used gave the poorest responseof the series, 2.0% and 1.7%. This subgroupcontained a higher proportion of older sub-jects, non-English speaking subjects, and sub-

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COMMUNITY SURVEYS PRE- AND POST-PROJECTINTERVENTIONSA total of 250 persons were interviewed beforethe project interventions were undertaken, and

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Table 3 Pre- and post-surveys: proportion of respondents who chose correct definition ofgenetic disease by demographic factors

Proportion choosing correct answer*

Respondents Pre (n=250) Post (n=248)

Age<20 11 (73.3%) 17 (85.0%)20-29 51 (86.4%) 52 (77.6%)30-34 39 (92.9%) 39 (79.6%)35-39 29 (82.9%) 25 (100%)40-49 41 (89.1%) 34 (94.4%)50-59 15 (62.5%) 25 (92.6%)60+ 19 (65.5%) 20 (83.3%)

SexMale 94 (77.0%) 92 (87.6%)Female 111 (86.7%) 120 (83.0%)

Highest level ofeducation completedPrimary 36 (61.0%) 15 (57.7%)High school 117 (84.8%) 141 (85.4%)Technical 37 (97.4%) 35 (97.2%)University 15 (100%) 21 (100%)

Marital statustNever married 39 (70.9%) 61 (84.7%)Married de facto 132 (86.8%) 116 (87.9%)Sep/wid/div 34 (79.1%) 35 (79.5%)

Country of birthAustralia/New Zealand 130 (82.8%) 155 (85.6%)UK 46 (80.7%) 36 (90.0%)Europe 16 (69.6%) 7 (77.8%)Other 13 (100%) 14 (77.8%)

Any children?Yes 165 (84.6%) 138 (89.0%)No 40 (72.7%) 74 (79.6%)

*Expressed as a percentage of all respondents in that category.tSeparated/widowedldivorced (sep/wid/div).

Table 4 Comparisons of knowledge and sources of knowledge of hereditary disease pre andpost the hereditary disease project interventions by sex of the respondent

In response to question: "Can you name any geneticdiseases?"

Adjusted OR*Pre No (%) Post No (%) (95% CI)

Nominated a Mendelian disorderFemales 37 (28.9%) 39 (27.3%) 0.80 (0.43, 1.48)Males 7 (5.7%) 15 (14.3%) 2.96 (1.04, 8.45)

Nominated a multfactorial disorderFemales 62 (48.4%) 83 (58.0%) 1.50 (0.86, 2.59)Males 46 (37.7%) 49 (46.7%) 1.55 (0.86, 2.79)

Nominated spina bifidaFemales 6 (4.7%) 15 (10.5%) 2.18 (0.75, 6.29)Males 2 ( 1.6%) 3 (2.9%) 1.65 (0.25, 10.74)

Nominated Down syndromeFemales 13 (10.2%) 34 (23.8%) 2.71 (1.26, 5.85)Males 5 ( 4.1%) 16 (15.2%) 6.41 (1.93, 21.31)

Nominated a health professional as a source of informationFemales 80 (62.5%) 115 (80.4%) 1.71 (1.00, 2.92)Males 74 (60.6%) 87 (82.8%) 3.01 (1.63, 5.56)

Nominated a hospital as a source of informationFemales 33 (25.8%) 55 (38.5%) 1.89 (1.09, 3.27)Males 32 (26.2%) 29 (27.6%) 0.94 (0.52, 1.69)

Nominated the Health Department as a source of informationFemales 34 (26.6%) 44 (30.8%) 1.25 (0.72, 2.17)Males 29 (23.8%) 24 (22.9%) 0.96 (0.51, 1.81)

Knew about Genetic Counselling Services in WAFemales 30 (23.4%) 34 (23.8%) 1.16 (0.63, 2.12)Males 13 (10.6%) 14 (13.3%) 1.45 (0.62, 3.38)

*OR, odds ratio = the odds of outcome after the project divided by the odds of outcome beforethe project.95% CI = 95% confidence intervals.Odds ratio adjusted for education, age, country of birth, marital status, and whether respondenthas any children.

a further 248 after the interventions. Respond-ents in the two surveys were similar in terms ofage, gender, and marital status, but there werefewer respondents born in the United King-dom and Europe in the second survey (andcorrespondingly more born in Australia andNew Zealand). Fewer respondents at the

second survey had children or had onlycompleted primary education.

In both surveys, respondents less likely tochoose the correct definition of genetic diseasewere those with less education, those who hadnever married, those born in Europe, and thosewho had no children. In the first survey but notthe second, respondents under 20 and over 50years of age were also less likely to choose thecorrect definition (table 3).

In response to the question "Can you nameany genetic diseases?", female respondentswere more likely than males to offer a validanswer. However, when comparing the pre-and post-surveys, an increase in knowledge (asassessed by the odds ratio) was seen for bothmales and females nominating a multifactorialdisorder, spina bifida, and Down syndrome.Very few of these differences were statisticallysignificant (table 4).There was no improvement in knowledge

between the two surveys for either men orwomen about who might benefit from geneticcounselling in five of six specified situations (ifthey already have a child with a seriousdisorder; when a woman over 35 years of ageplans to have a baby; when marrying a closerelative; when either parent has a serious disor-der which may be passed on to their children;and when a woman has had more than twomiscarriages). A three-fold (but statisticallynon-significant) increase was seen in knowl-edge about the benefit of genetic counselling ifa disorder runs in the family (data not shown).Both men and women were significantly

more likely to nominate a health professional asa source of information about genetic diseaseafter the project than they were before theproject. Women, but not men, also nominatedhospitals and the Health Department morefrequently after the project. Fewer than one infour respondents knew of the existence of thegenetic counselling services and there was littleincrease in this knowledge over the studyperiod for either men or women (table 4).At the time of the second survey, respond-

ents were shown the pamphlet and postersproduced for the project and asked if they hadseen them before. A total of 8.3% of males and16.9% of females had seen the pamphlets, and10.5% ofmales and 37.8% of females had seenthe most widely distributed of the posters.More women (29.4%) than men (16.2%)reported seeing the static display. Only 14.3%of males and 20.9% of females recalled receiv-ing anything through the mail about hereditarydisease. People who had seen the pamphlets orthe poster were about three times more likely tohave chosen the correct definition of a geneticdisease.

DiscussionIn this pilot Hereditary Disease Project promo-tional materials were developed, informationwas provided to health professionals and thecommunity, and a genetic outreach clinic wasestablished. In the community surveys beforeand after the promotional events, respondentswho were married, middle aged, had children,had a higher level of education, or were born in

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Australia, New Zealand, or the United King-dom were more likely to choose the correctdefinition of genetic disease. Women alsotended to be better informed about hereditarydisease. However, there were few significantimprovements in knowledge after the interven-tions among male or female respondents andthe overall level of knowledge was not high.Health professionals were commonly cited as asource of information about hereditary disease,underscoring the importance of GPs havingthe knowledge of either the condition thepatient may be enquiring about or theknowledge of where such information can beprovided.There are several possible reasons for the

lack ofimprovement in awareness of hereditarydisease as a result of this project. Firstly, thetime frame of the project was short (18months) and because of the complexity of thehereditary disease messages, they may be lesseasy to impart quickly and in simple form, bothto the public and to health professionals. A fur-ther explanation is that the materials may nothave been distributed sufficiently widely. Athird or fewer of the people surveyed recalledseeing the pamphlets, posters, or the static dis-play, and an even smaller proportion couldrecall receiving anything through the mailabout hereditary disease. This was despite dis-tributing the materials in many locations wherewomen and children congregate, along withhealth centres, pharmacies, and general prac-tices, and the fact that all households in thetarget area had been sent at least one projectletter. It may be that a more diverse range ofmaterials with messages of greater relevance tothe informal or lay views ofthe community mayhave been more successful in communicatinghereditary messages. 16-19There is evidence that some genetic infor-

mation is of low interest to recipients exceptwhen they are pregnant or actually planning afamily.'5 20 There is greater interest in infor-mation about particular hereditary diseaseswhere that level of knowledge within the com-munity is greater or if the recipient has heard orknows of a person or family member with thecondition.20"2 The project may not haveaccounted for important perceptive and cul-tural factors which strongly influence therecognition of the intended genetic message.Lay belief has been identified to be ofimportance to people and families in theirinterpretation of hereditary principles.16-19GPs, who were generally supportive of the

project, require further support and encour-agement in genetic education and indicatedtheir desire for further practical information,such as ways of identifying patients who mightbenefit from genetic counselling. At least athird of GPs have indicated in other studiesthat they see a role for themselves in commu-nity health education, which is in keeping withwhat is expected of them by many in thecommunity.22 CHNs were enthusiastic in theirsupport of the project, referring patients inappropriate circumstances. Special event Ge-netic Education Weeks for health professionalshave received acceptance and favourable re-

sponses, but there has been no objective evalu-ation over time to assess their effect.8 In thisproject, many of the materials used in letter-drop pamphlets appeared to draw a satisfactoryresponse rate, but in the shorter term did notraise the awareness of hereditary diseases.Future programmes could consider higherprofile media channels, such as television. Agreater precision in targeting of information(for example, to females of reproductive age)may be advantageous but a possible weaknessinherent in this approach is that the older gen-eration may be those who provide the familywith information on this subject."6 18The multitude of hereditary diseases, many

of them rare, makes it impossible for aprogramme to address each individually. Ourgeneral message, such as Will my baby be bornhealthy?, was well received by focus groups andby interviewees, but alone did not registergreatly in the community awareness of heredi-tary disease.We believe that the potential impact of

medical genetics in community health care isso great that there is a need to conduct furtherstudies implementing some of the suggestedchanges in approach. A future programme topromote community awareness of hereditarydisease should be multifaceted and longlasting. Ingrained misconceptions about inher-itance can be best addressed by education,firstly at upper school levels. Some of the morecommon and significant misconceptions, likethose referring to the risks of autosomal reces-sive inheritance, require the development ofpromotional materials which directly addressand simply describe the mechanisms. Focusgroups were used to develop materials for thisproject, but greater cognisance of informal orlay beliefs will demand further research andconsumer involvement in the development ofeducational programmes.'8 19 23-25The rapid pace ofnew discoveries in the field

of molecular and clinical genetics has revolu-tionised the management of at risk families.However, formal programmes to transmitappropriate knowledge to both the public andhealth professionals have been conspicuouslyabsent. The optimal development of educa-tion, counselling, and support strategies re-quires much research, new approaches, andshould lead to people, families, and health pro-fessionals becoming more aware of hereditarydisease risks and choices in terms of manage-ment and reproduction options which were notpreviously available.The authors would like to thank Elizabeth

Reeson and Terri Cutmore for valuable re-search assistance and support, and Yve Gauntand Kate Wang for typing and layout advice.The work was supported by the Common-wealth Department of Health and FamilyServices Research and Development Grantfunding.

1 Modell B, Modell M. Towards a healthy baby: congenital disor-ders and the new genetics in primary health care. Oxford:Oxford University Press, 1992.

2 Czeizel AB, Intody Z, Model B. What proportion ofcongenital abnormalities can be prevented? BMY 1993;306:499-503.

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