Consumers desire more genetic testing, but not designer babies

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http://www.eurekalert.org/pub_releases/2009-01/nlmc-cdm012609.php

Consumers desire more genetic testing, but not designer babies

A new study by researchers at NYU Langone Medical Center found a high

desire for additional genetic testing among consumers for life

altering and threatening medical conditions including mental

retardation, blindness, deafness, cancer, heart disease, dwarfism and

shortened lifespan from death by 5 years of age. Consumers, however,

are less interested in prenatal genetic testing for traits including

tall stature, superior athletic ability and superior intelligence.

" Our research has discovered that although the media portrays a

desire for 'designer babies', this does not appear to be true among

consumers of genetic testing services, " said hanne Hathaway, MS

CGC, a certified genetic counselor at the NYU Cancer Institute. The

article entitled, " Consumers' Desire towards Current and Prospective

Reproductive Genetic Testing " published online early by the Journal

of Genetic Counseling finds that consumers desire more genetic

testing than what is currently offered but their selection of tests

have limits on enhancements.

Prior to their initial visit with a genetic counselor at NYU's Human

Genetics Program, 999 patients completed a one-page, 10 question

categorical survey to assess their attitude towards reproductive

genetic testing between July 2006 and February 2007. These consumers

were asked to indicate traits and conditions for which they would

choose reproductive genetic testing by circling answers from a list

of thirteen that included both diseases and enhancements.

The study found that the majority of respondents would elect for the

screening of the following conditions: mental retardation (75%),

deafness (54%), blindness (56%), heart disease (52%), and cancer

(51%). The results indicate that less than half of population (49.3%)

would choose testing for a condition that resulted in death by 5

years of age, whereas even less parents (only 41.1%, 24.9%, and 19%)

would choose testing for conditions that results in death by 20, 40,

and 50 years of age, respectively. Only a minority of respondents

would want genetic testing for enhancements such as athletic ability

(10 %) or superior intelligence (12.6%). Also, the majority of

respondents (52.2%) indicated that there were no conditions for which

genetic testing should never be offered.

" As our knowledge and abilities in molecular genetics continues to

expand, so does our ability to detect certain conditions and traits

prenatally, " said Dr. Harry Ostrer, Director of Human Genetics

Program at NYU Langone Medical Center. " Our study gauged the

consumers' opinion towards reproductive testing for diseases and

enhancements. Our research has found that a majority of respondents

would elect to have prenatal genetic testing for life altering

conditions but most respondents did not desire testing for

enhancements. This survey also demonstrated that there was a desire

for additional reproductive testing for medical conditions or life

altering diseases, than currently offered. "

In addition researchers investigated whether learning about risk for

disease to oneself might dissuade an individual from undergoing

prenatal genetic testing. The survey revealed that about 80% of all

respondents would still have testing if it revealed increased risk

for disease for oneself including Parkinson's disease, early

menopause, breast cancer and if it revealed non-paternity.

According to researchers, this study recognizes the increased

consumer demand for genetic testing and this higher demand may

already be exceeding the number of available genetic counselors.

Consumers may have also followed their own personal values or belief

systems when assessing choice for genetic tests and that genetic

counselors may want to develop a policy statement about new genetic

tests that are becoming available and the ethical concerns regarding

prenatal testing for life altering conditions.

The authors concluded that, " it seems unlikely that the 'Age of

Designer Babies' is near at- hand. "