A Tale of Two Cities

Genetics and Personalized Health Care for Children WilfondA Tale of Two Cities
Genomics and parental
Seattle Children’s Hospital
Professor and Chief, Division of Bioethics. Department of Pediatrics University of Washington School of Medicine
Treuman Katz Center for Pediatric Bioethics - 2008 Conference
A Tale of Two Cities
How should advances in testing capabilities shift the analysis of the ethical issues in pediatric genetic testing?
Clinical integration of
new genomic tests
Genomic testing
As problematic as day-spas, a $200 cabernet, or pet psychics?
Even if this is appropriate to offer to the public, should parents be able to obtain such testing for their children?
1. How should the ethical analysis developed for pediatric genetic testing be applied to genomic testing in children?
2. How might genomic testing stress the “fault-lines” of the traditional ethical approaches to testing children?
Parental decision making for genetic testing
Limited by professionals’ concerns about what is in children’s interests
These limitations continue to be criticized for not adequately respecting parental decision-making
Will new genomic technologies shift the equilibrium towards expanded or reduced parental discretion?
Newborn screening
Testing for adult onset disorders and
carrier testing for recessive disorders
Not routinely offering such testing in children
ASHG/ACMG 1995
AAP 2001
Such testing is done in children as a consequence of
Prenatal Diagnosis
Newborn Screening
Newborn screening
Often done without parental awareness
Occasionally performed over parental objections
Unifying rationales for these different approaches
Timely clinical benefit
Timely clinical benefit
The greater the willingness to recommend, persuade or “require” testing
As the potential clinical benefit becomes less likely, more distant, or less profound
The greater the willingness to not recommend, persuade or “prohibit” testing
The right to an open future
Parents should not be able to make decisions that seriously limit a child’s future
Not agreeing to PKU screening
Could result in preventable mental retardation
Testing a young child for BRCA or APOE
Could limit later decisions as an adult to forgo testing
Limiting parental discretion only for serious risks of harm
Parental discretion for education, religion, and sports
Treatment for chronic disease
Medical interventions for psychosocial benefits
Apnea monitors, Orthotic helmets, Cleft lip repair
The approaches to both NBS and childhood testing are not consistent with respect for parental discretion
Empirical data about risks
Most families readily accept NBS
Limited provisions for requiring subsequent treatment
Respecting discretion becomes more important new tests are introduced with less immediate benefits
Testing children for adult onset diseases
Traditional risks have been speculative and overstated
Preexisting impact of living in high risk family
Reduced anxiety from certainly
Pragmatically, current approaches acknowledge some parental discretion
Newborn screening
Greater appreciation of the importance of education
Testing children for adult onset diseases
Current professional statements acknowledge some contexts where testing is appropriate
An uncertain policy
“Thus, when faced with uncertainty, the provider may be obligated to avoid the possibility of harm, rather than to provide unclear benefits. There may be rebuttable presumption to defer testing unless the risk/benefit ratio is favorable.”
“On the other hand, in specific cases where the benefits and harms of genetic testing are more uncertain, more weight should be given to the wishes of the competent adolescent and the parents.”
ASHG/ACMG AJHG, 57:1233-41, 1995
Impact of data on practice and policy
Applying current policy approaches to guide practice recommendations
Using standard criteria in current policies
“Timely medical benefit”
Applying data to revise policy approaches
Current data support revising policies to support greater parental discretion when benefit/risks are less clear
Cautioning parents about testing and recommending deferral of decisions until child is capable of participating in the decision
The changing paradigm of clinical genomics
Genetic testing
One test
Genomic testing
Ongoing epidemiological studies and clinical trials will both clarify and contradict our understanding of gene-environment-behavioral interactions
Interpretations will need to be selected
Based on computer algorithms applied to personal profiles
Should parents be able to scan their child’s genome?
The standard answer on the medical board exam:
No
Why?
No clear medical benefit
Scope will include behavioral traits, which may increase social stigma, and remove the choice for the later adult
Even if less harm found for childhood testing in high risk families, we certainly don’t know what children will do with this information
Some parental interest in genomic testing can be anticipated
Genomic testing will be routinely offered in children because of valuable clinical uses at some point
Some parents may want additional information
Information about child health is consistently reported as a strong reason parents seek their own testing
As “personal utility” is given more weight, the distinction between “health related” information and “recreational” information will blurred
Some parents will want a wider range of information about their children
Meaningful information
Clinically important
Personally importantly
Clinically interesting
Personally interesting
The impact of these new technologies on children is not known
Clinical concerns about testing might increase as tests are used to direct clinical decisions
Clinical management decisions based on misinterpreted or misunderstood information can result in adverse health outcomes
But, is this any worse than many “evidence-based” decisions that turn out be harmful?
Psychosocial concerns about genetic testing might decrease when everyone potentially has access to all their genomic data
Incidental findings and returning results
Sharing information with family members
Or, there may be greater need to involve families to improve interpretations
Need for further research
What will the data show?
Limited parental interest
Impact of marketing?
Difficult to distinguish from social, environmental, cultural, geographic, and economic influences
Impact diminishes as genomic tests become routine and unending interpretive challenges become familiar
Advising parents
Parents will need advice and recommendations about how to approach genomic information
“Requesting all information and interpretations” will be a meaningless request
Reframing the Request
“Neither the best of times, nor the worst of times”
“Directive” recommendations for parents to obtain some data but not other data will be important
Need to accommodate those parents who want more or less than we think is appropriate
Some parental discretion about which algorithms to use on newborns and young children once genomic profiling is economically feasible
Consistent with general trend
Less novelty and more acceptance over time because of the broad range of information, rather than discreetly “important” and “not important” information
A Tale of Two Cities
Mandatory
Restricted
about decisions regarding

Date post:	31-Dec-2015
Category:	Documents
Upload:	serina-brennan
View:	24 times
Download:	2 times

A Tale of Two Cities

Documents