Transcript handout - Torah in Motion

Genetic Testing of Adolescents:
Jewish Perspectives
Rabbi Aaron E. Glatt, MD
Young Israel of Woodmere
&
Congregation Anshei Chesed
President / CEO
St. Joseph Hospital, Bethpage, NY
Professor of Clinical Medicine, NY Medical College
Do Medicine and Halacha collide?
Science is integral part of Torah!
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No possible contradictions re science and Torah
No conflict between chazal and investigation
Halacha must be based upon science and facts
Da’as Torah must be based upon science and facts
A posek cannot paskan in a scientific vacuum
One will inevitably pasken incorrectly 
absent a sound understanding of the facts,
be it bishul, medicine, business or shalom bayis
Facts change
halacha “rightsizes”
Yeshayahu visiting Chizkiyahu
“behadei kivshei deRachmana lama lach”
Brachos 10a
How Does the Torah View
Scientific Exploration?
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Fill the earth “vechivshuha” (Beraishis 1:28)
You shall love the Lord your G-d (Devarim 6:5)
Rambam Hilkhot Yesodei ha-Torah (2:2)
Love and knowledge are synonymous
One acquires knowledge of G-d through His
wondrous works
• Thus, mastery of theoretical pure science is not
merely salutatory; it is a mizvah
Is Genetic Testing Allowed?
Q: Should Jews be subjects in genetic studies to
understand hereditary or genetic traits prevalent in
the Jewish population?
In light of the foregoing, the answer is a clear and
resounding yes!
Such studies are enthusiastically welcomed –
even if they yield no therapeutic benefit –
for increased understanding of chachmat Hashem
HaRav J. David Bleich, Tradition, 2000
Is genetic testing advisable?
• A person is not allowed to put himself at danger
• Turning a blind eye to danger is not emunah
– it is an act of rash conceit
• Refusal to seek out information is tantamount to
rejection of providential beneficence
• Bitachon does not render genetic testing redundant
HaRav J. David Bleich, Tradition, 2000
A Tale of Personal Tragedy
Sarah dabbed her eyes and held back tears.
“Have you ever been in love? Have you ever gazed into another's
eyes and known your search was finally over?”
“After five years of dating, I met the man with whom I wanted to
build a home. He was everything I was waiting for. David was so
kind, so real; the person I felt I could share my life with. He
understood me. We were to be engaged.”
And then the phone rang…
We were told our children would have a 1 in 4 chance
of suffering a debilitating and fatal disease…
Igros Moshe, Even Ha'ezer 4:10
HaRav Moshe to Rabbi M. Tendler, 18 Adar, 5733
• Even though Tay Sachs is rare…
• And theoretically one could rely on Devarim (18:13)
 “Tamim tehiyeh im Hashem Elokecha”
 Rashi: Trust in Hashem / don’t divine the future
• Yet - don’t close your eyes! Instead, get tested!
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Simple blood test
Terrible parental suffering if have Tay Sachs child
Thus get tested pre-marriage
Mitzvah to publicize testing in papers and media
Igros Moshe, Even Ha'ezer 4:10
(cont.)
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As people do not understand what ‘carrier’ means…
Irrational stigma – thus must test “betzina”
Do not disclose test result to others
Physicians cannot disclose test results to others
Do not test before one is ready to marry
Psychological concerns if test at too young an age
Privacy violations if test at too young an age
Genetic Testing to Prevent Disease
• ‫ דור ישרים‬- upright generation (Tehilim 112:2)
• Aka Committee for Prevention of Genetic Diseases
• Testing is currently offered for the following:
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Tay Sachs
-- Bloom syndrome
Familial dysautonomia
-- Niemann-Pick
Cystic fibrosis
-- Mucolipidosis (type IV)
Canavan
-- Fanconi anemia (type C)
Glycogen storage disease (type 1)
Gaucher's disease (only by request)
Genetic Testing to Prevent Disease
Dor Yeshorim
• Started in the 1980s by Rabbi Joseph Ekstein
• Four of first five children died of Tay Sachs
• None of his children born after founding of Dor
Yeshorim developed Tay Sachs
• Near-total disappearance of Tay Sachs from
orthodox community
• Prevents many very difficult halachic scenarios
Direct vs. Indirect Genetic Screening
Direct
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Physician / Genetic Counselor
Dominant or recessive genes
Serious &/or less serious
No limit on tests
Testing anytime
Partner testing unnecessary
unless you are a carrier
• Educational opportunity
• Variable cost
• Insurance / out of pocket
Indirect
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Dor Yeshorim
Recessive genes only
Serious illness only
Set panel (10 tests)
Pre “serious” dating only
Compatibility of partners
Carriers not identified
Negative stereotype of
carrier reinforced
• Set subsidized cost
Which test is right for adolescents?
On the other hand…
• Dominant gene testing is altogether different
• Positive results may be obtained decades
before disease / symptoms occur
• Negative test means the individual does not
carry the gene; will not develop disease
• So – what are the risks and benefits of testing?
Dominant Gene Screening:
Risk Benefit Analysis
Don’t Test
Test
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Treatment available
Prevention
Amelioration
Put affairs in order
Experimental therapies
Remove anxiety if strong
family history
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Pre- Sx result is life-changing
Financial implications
Discrimination
Social / marriage implications
Psychological implications
Suicide risk
Caught between a rock and a hard place…
Illustrating the dilemma: Example 1
BRCA1 and BRCA2 gene testing
• Halachically mandated
– if results are likely to significantly affect treatment,
management, longevity or well-being…
– Above not clearly evident in all / many cases
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Plus – must consider:
Social discrimination / shidduchim impact
Insurance protection: NY's Insurance Law § 4224
Job protection: NY Civil Rights Law § 296
Prohibit discrimination from genetic predisposition
Illustrating the dilemma: Example 2
Huntington's Disease (chorea)
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Manifests at a comparatively young age
Debilitating
Ultimately lethal
No treatment available
No preventive therapy available
Disclosure in prospective marriage mandatory
Kiddushei ta’os – annulment!
Conclusions
• Genetic screening for recessive traits is great
• Must be done with maximal halachic benefit
• Must be done with minimal halachic harm
 Remove ‘lifnei iver’ issues
• Genetic Screening for dominant genes is
fraught with potential disaster
• Each case must be individualized
• “behadei kivshei deRachmana lama lach”
Thank you for listening…
• Accurate medical
information is
essential to properly
answer halachic
inquiries
• Halacha doesn’t
change, but ‘facts’ do
• Ask shailos