genetic testing of adolescents: jewish perspectives rabbi aaron e. glatt, md young israel of...

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!

• 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”

or

Yeshayahu visiting ChizkiyahuYeshayahu visiting Chizkiyahu“behadei kivshei deRachmana lama lach”

Brachos 10a

How Does the Torah View Scientific Exploration?

• 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 TragedySarah 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…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 4:10HaRav 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! 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.)

• 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

• ישרים upright generation (Tehilim 112:2) -דור

• Aka Committee for Prevention of Genetic Diseases

• Testing is currently offered for the following:– 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 ScreeningDirect

• 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

• 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 AnalysisTest

• Treatment available

• Prevention

• Amelioration

• Put affairs in order

• Experimental therapies

• Remove anxiety if strong family history

Don’t Test

• 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 1BRCA1 and BRCA2 gene testingBRCA1 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

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)

• 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