NYP no. 5756.2

CCAR RESPONSA COMMITTEE

5756.2

Privacy and the Disclosure of Personal Medical Information

She’elah.

I am in my late twenties and about to be ordained as a rabbi. My father has Huntington’s Disease, a genetically transmitted condition that begins to show itself when a person reaches his or her thirties or forties. If I test positive for the disease, am I obligated to inform my congregation and the Placement Commission? Would the Placement Commission be obligated to share this information with any prospective congregation that would be interested in hiring me? Given that I fear employment discrimination should I test positive, am I obliged to be tested at all?

Teshuvah.

Huntington’s Disease is an inherited, chronic, and progressive disorder of the nervous system, the onset of which generally occurs in midlife. It is characterized by involuntary movements, cognitive decline, and emotional disturbance. Those afflicted exhibit what physicians term “movement disorder,” which may include facial twitching, unsteadiness in gait, and spasticity. The disease severely affects the patient’s speech, to the point that he or she will ultimately become unintelligible. Other manifestations include poor impulse control, depression, delusions, and even psychosis. Although some experimental treatments appear promising, no therapy currently known can halt this disease.[1]1

As the foregoing medical description makes abundantly clear, Huntington’s Disease is a debilitating condition, the symptoms of which would render it impossible for you to discharge the duties of a congregational rabbi. You are not presently diagnosed with this disease, nor have you taken the genetic test which would reveal whether you are “at risk” of contracting it.2 Still, you are rightly concerned that should you test positive, the sharing of these results would adversely affect the prospects for your employment. Your question, then, is most sensitive and difficult on religious as well as personal grounds: does Jewish tradition require you to reveal this damaging information to a congregation or to any other institution at which you are employed or with which you may be interested in contracting for your rabbinical services?

  1. Personal Integrity and the Prohibition against Deception. Judaism, as we know, places a great emphasis upon honesty in human conduct. The Torah cautions us against lying (Leviticus 19:11) and bearing false witness (Exodus 20:13; Deuteronomy 5:17)3 and admonishes us to “keep far from falsehood” (Exodus 23:7).4 The rabbis teach that truth is the very seal of God, the signature of the divine;5 it follows that we, who are instructed to imitate God’s ways in our own lives,6 must comport ourselves with the highest respect for the truth.7 As Maimonides puts it: “one should not say one thing and mean another. Rather, let one’s outer expression reflect the person within, so that one speaks what is truly in one’s heart.”8 Expressed in negative language, this emphasis upon truth becomes a prohibition against the practice of deception, or geneivat da`at.9 This Hebrew term is taken from the word (geneivah) which expresses the idea of “theft”; hence, one who deliberately creates a false impression in the mind of another is guilty of an act of trespass, of quite literally “robbing the mind” of that person.10 Geneivat da`at occurs frequently in connection with deceptive business practices, which our tradition expressly forbids.11 Significantly, however, the prohibition applies even when the act of deception does not result in any monetary loss to the buyer.12  

    These texts and teachings, to which more could easily be added, establish a strong prima facie case in favor of full disclosure of your personal medical history. First of all, the very act of concealing these facts suggests a transgression against the standards of personal honesty and integrity which our tradition demands from us in our everyday social conduct. In addition, this concealment would form an integral part of a business transaction, the process by which you will seek employment as a rabbi. The possibility that you may one day develop Huntington’s Disease and be rendered unable to fulfill your duties as a congregational rabbi is unquestionably a matter of great relevance to the Placement Commission and to the communities you might serve. To withhold this pertinent information from them is quite possibly an act of geneivat da`at, especially since, as you note in your she’elah, knowledge of your medical history is likely to be a critical factor in a congregation’s decision as to your employment.You could, of course, argue that inasmuch as you have not yet tested positively for the Huntington’s gene, you have no “pertinent” medical information to reveal. Even in the worst case, moreover, the onset of the disease is some years away. The congregation would therefore suffer no harm by offering you a contract now, since in all probability you will be able to fulfill your duties as their rabbi. These arguments fail, however, because in the final analysis they are offered in defense of deception, of geneivat da`at. Deceptive behavior is, in and of itself, the negation of integrity and a transgression against morality, quite apart from the damage it may or may not cause. And we have seen that Jewish tradition prohibits us from creating a false impression in the minds of others even when to do so causes them no financial harm.

    Then, too, the fact that you are about to become a rabbi should play a crucial role in your thinking. We do not claim that a rabbi is a “special case” when it comes to morality; surely the Torah demands the same standard of ethical behavior from all of us, rabbis and laypersons alike. Yet those who would present themselves as spiritual leaders of the Jewish community must recognize that they are expected to exemplify that standard in their personal and professional lives. For you to secure your first congregational position by withholding relevant information from your employer–that is to say, for you to begin your rabbinical career on a falsehood–would do severe damage to your own reputation should the truth later be revealed. In a wider context, it would adversely affect the standing of the rabbinate as a whole. Our ability to serve the Jewish people as rabbis rests in large part upon their perception of us as men and women of character and integrity. And that perception is called into doubt each time a rabbi is found to have violated the canons of truth and honesty in his or her dealings with the community.

  2. Jewish Tradition and the “Right to Privacy.” All of this, however, must be balanced against the concern which our tradition voices for the privacy of the individual, the right to be shielded against the prying eyes of other individuals and of the community as a whole. Although Jewish law does not formally recognize a “right to privacy”—indeed, Judaism does not speak the language of “rights” in general—it does know of certain obligations whose observance would guarantee protections which other legal systems classify under this heading.One of these obligations involves the prohibition against the unwarranted transgression of a person’s private domain. The Torah states explicitly that “when you make a loan of any sort to your neighbor, you must not enter his house to take his pledge. You must remain outside, while the man to whom you made the loan brings the pledge out to you” (Deuteronomy 24:10-11). This prohibition applies to the bailiff of the court (shaliach beit din) as well as to the lender.13 Mention should also be made of the concept hezek re’iyah, harm caused by the prying eyes of neighbors, which the halakhah defines as an actionable tort: “When neighbors own jointly a courtyard that is large enough to be divided, any one of them may require the others to erect a partition in the middle of it so that each one may use his portion of the courtyard without being seen by the others. We hold that damage resulting from sight (hezek re’iyah) is real damage.”14 For this reason, a neighbor who wishes to install a window in his wall that opens upon another’s property, or upon a jointly-owned courtyard can be prevented from doing so.15

    Another privacy protection is guaranteed in the medieval enactment (takanah), attributed to Rabbenu Gershom (Me’or Hagolah, “the light of the exile,” 10th-century Rhineland) forbidding one to read a letter written and sent by another person without that person’s consent.16 One who violated this takanah was subject to excommunication.17

    Especially important to our discussion are the various kinds of prohibited speech. The Torah cautions us against gossip or “talebearing” (Leviticus 19:16), which is also understood as a violation of the personal domain of the individual.18 Maimonides divides this law into three categories:19

     

    1. one who gossips about another person (holekh rakhil; hameragel bechavero), even if his words are true and are not meant to harm the other. “ Who is a gossiper? One who carries words from person to person, saying ‘thus said so-and-so’ or ‘this is what I heard about so-and-so’. Even if what he says is true, he is a destroyer of the world.” One who does this violates the commandment against tale-bearing (Leviticus 19:16);
    2. one who practices lashon hara, who speaks negatively about another person even if what is said is true;
    3. one who is motzi shem ra, who spreads falsehood and slander to damage another person’s reputation.

Our tradition severely condemns these sins of speech; the ancient rabbis went so far as to compare slander with leprosy.20 In recent times, R. Yisrael Meir Hakohen Kagan devoted his famous Chafetz Chayim, one of the outstanding “mussar” texts in Jewish history,21 to the sins of gossip and slander, which he declares violate the negative commandment “do not hate your brother in your heart” (Leviticus 19:17) and the positive commandment to “love your neighbor as yourself” (Leviticus 19:18).22 “Gossip” as a prohibited activity includes “tales carried from one person to another,” even if the information transmitted is truthful, even if it is not meant disparagingly, and even if the person who is the object of the gossip would not deny the report were he or she asked about it.23

What do we learn from these facts of Jewish law, from the prohibitions against trespassing or spying upon a neighbor’s abode, against reading another’s private correspondence, and against engaging in gossip and slander? We learn, first and foremost, that Judaism guarantees a significant range of protection to our private lives. This, to repeat, does not imply that Jewish tradition knows of such a thing as a right to privacy, for Rabbinic Judaism is not a libertarian philosophy. On the contrary: in addition to the prohibitions just described, it includes doctrines such as the duty to “rebuke your neighbor” (hokheach tokhiach et amitekha; Leviticus 19:17)24 and the assertion that “all Jews are responsible for one another,”25 teachings which express the idea that each one of us has at some point the obligation to intervene into the “private life” of a fellow Jew, to be informed as to his or her personal behavior and, if possible, to set that person back on the path of Torah and mitzvot. Nonetheless, the halakhic proscriptions of hezek re’iyah and rekhilut come to teach us that reasonable limits must be placed upon this sort of intervention. Our “right” to take an active interest in the affairs of others is to be balanced against the halakhic demand that one’s home be shielded from the gaze of neighbors and that one’s name and reputation be protected from violation by others, however well-meaning they may be. There are aspects of our existence which are and must remain off-limits to the eyes and tongues of those among whom we live, and we are therefore under no moral or religious obligation to share with them information about ourselves that they have no legitimate reason to know. This conclusion drawn from our law may not be the exact equivalent of the “right to privacy” in other legal systems. But it does express, in language too clear to permit of misunderstanding, a commitment to the proposition that all of us, created in the divine image, are possessed of a dignity which at some critical point requires that all others leave us be and let us alone.

This means, in practical terms, that our lives are not an open book. We have a duty to be truthful in our dealings with others, including our employers, but this duty must be measured against our justifiable desire, endorsed by the halakhah, to keep our private lives private. With respect to economic life, it means that our employers rightfully demand that we reveal to them information about ourselves which has a legitimate bearing upon our performance of the job for which we have contracted. They are not, however, entitled to know everything about us that they might wish to know. In the case at hand, the task you face is to determine just where to draw the line between these two conflicting obligations.

 

  1. Fixing the Balance: To Disclose or To Conceal? At what point does the demand for truth override our legitimate concern for privacy and the prohibition against gossip? We might begin our analysis with the observation that danger to life quite obviously outweighs any expectation of privacy and confidentiality. The rule that “no consideration takes precedence over the preservation of life”26 would certainly require that one who possesses information concerning a threat to the life of another must reveal that knowledge. This obligation is generally true even if one has taken an oath of confidentiality with respect to the person who is the source of that information.27 In this context, “the preservation of life” has been broadened by our tradition to include rescuing another person from various kinds of danger or unfortunate circumstances.28 

    On the other hand, in cases where mortal danger is not clearly involved, the rule that we refrain from violating the dignity of others can preclude us from taking actions that would otherwise seem well intentioned. This Committee, for example, has ruled that the presence in the general population of HIV, the virus which causes AIDS, does not warrant the institution of compulsory testing for that virus unless and until it poses a significant health risk to that population. To require testing in the absence of a greater degree of danger was seen as an unjustified intrusion into the private domain of the individual.29 We have also found that lashon hara and gossip are inappropriate even when they are shared between husband and wife and are ostensibly aimed at improving the marital relationship.30 From these decisions and from their supporting argumentation we would derive the following rule-of-thumb for cases such as this: respect for privacy takes precedence over the sharing of personal information in most cases. Those who seek to acquire and to make use of information concerning other persons must meet a fairly rigorous burden of proof in order to be permitted to do so.

    In the case before us, we do not believe that either the Placement Commission or any potential employer at this time meets that burden of proof. You are obliged to share with them only that personal or family medical information which is relevant to your employment, and at present, no such information exists. You do not at this time suffer from Huntington’s Disease. That your father has the illness does not indicate with certainty that you are a carrier of the Huntington’s gene, and even if you were a carrier it is not certain that you would develop the disease.31 The ethical duty to reveal the truth to your potential employers refers specifically to truth, to matters of fact; it does not entail an obligation to reveal matters of conjecture, possibility, and “what-if”. You need not inform them that you might at some unspecified future time develop Huntington’s, for this is hardly news; at some point any person might develop a debilitating or terminal disease. You need only be able to assure them that, barring circumstances that cannot reasonably be foreseen, you are confident that no physical impairment will prevent you from fulfilling the obligations of your service during the period of your contract. The question is whether you can provide that assurance now. It seems to us that you can in all sincerity answer “yes” to this question, for even if you were to test positive for the gene it is by no means certain that you would develop the disease. Given your age, moreover, you would have good reason to believe that you were not likely to contract Huntington’s Disease during your initial term of employment.

    This implies that you have no obligation to have yourself tested for the gene, although for personal reasons you may wish to do so. Nor is there any obligation on your part to share the results of that test with the Placement Commission or with potential employers, since those results cannot predict with certainty that you will develop the disease. In addition, should the Placement Commission possess that information, it would not be entitled to share it with potential employers, since it is not clear that even a “positive” test for the gene constitutes relevant medical information. The report in that instance would amount to gossip and the spreading of an evil report, the unwarranted revelation of details that ought to remain secret.32

    On the other hand, should there arise a real and concrete indication that you may not be able to fulfill your rabbinical responsibilities–should you begin to exhibit the early signs of Huntington’s Disease–you are morally obliged to share this information with your employer. It is at that point that information concerning your medical condition ceases to be a purely private matter and becomes an issue that your employer is entitled to know.

    Ultimately, you are the only person who can decide if and when that point has arrived. You and you alone can determine whether the time has come to reveal the facts of your personal medical situation to your employer. We trust that you will make the correct decision. And we pray that God grant you health, vigor, and many long years of service as a rabbi to your people.

NOTES

  1. See J. Willis Hurst, general editor, Medicine for the Practicing Physician, Fourth Edition. (Stamford, CT, 1996), 1764-1768.
  2. Ibid. The test is administered to an individual whose parent suffered from the disease. A “positive” result on this test means that the person carries the gene which causes Huntington’s and therefore is “at risk” of developing the condition.
  3. We use the term “Jewish law” advisedly. In actuality, your relationship with a potential employer may be governed by the civil law in force within the relevant jurisdiction. You are therefore well advised to consult competent legal counsel prior to your interview.
  4. Much rabbinic commentary on this verse (see B. Shevuot 30b-31a) connects it expressly to conduct demanded of the dayan, the rabbinic judge. Hence, we might say that this verse is particularly relevant to issues involving a rabbi’s dealings with his or her community.
  5. Much rabbinic commentary on this verse (see B. Shevuot 30b-31a) connects it expressly to conduct demanded of the dayan, the rabbinic judge. Hence, we might say that this verse is particularly relevant to issues involving a rabbi’s dealings with his or her community.
  6. See B. Sotah 14a, on Deut. 13:5: how is it possible to “follow after Adonai your God”? By adopting His ways. Thus, just as God clothes the naked, so should you clothe the naked, etc. See also Rambam, Sefer Hamitzvot, pos. comm. No. 8.
  7. See B. Yoma 86a: “You shall love Adonai your God” (Deut. 6:5): act so that God’s name will be beloved because of you” make sure that your business dealings are conducted honestly”.
  8. Yad, De`ot 2:6.
  9. See Gen. 31:26 and II Sam. 15:6, where the root ganav signifies the act of deceiving others.
  10. B. Chulin 94a; Yad, De`ot 2:6. Some authorities hold that the prohibition of genevat da`at is a Toraitic one, derived from Lev.19:11, which prohibits both robbery (lo tignovu) and lying; see Chidushey Haritva to Chulin 94a. Since there is no midrashic evidence that the Rabbis read Lev. 19:11 in this way, this interpretation represents a significant expansion of the legal content of the biblical verse by post-talmudic tradition.
  11. The general prohibitory statements are found in Yad, Mekhirah 18:1 and SA CM 228:6. The texts cite numerous examples of deceptive commercial practices. One is forbidden to remove the chaff from the top of the storage-bin, for this creates a false impression that the chaff has been removed from the entire bin. Similarly, one is forbidden to paint or ornament objects for sale in such a way as to create the impression that these are newer–and hence more valuable–than they really are. See M. Bava Metzi`a 4:12; Yad, Mekhirah 18:2, 4; SA CM 228:9, 17.
  12. Sefer Mei’irat Einayim to SA CM 228, no. 7; Arukh Hashulchan, CM 228, par. 3. A transaction involving financial loss falls under the rubric of mekach ta`ut and can be annulled. See Yad, Mekhirah 15:1ff.
  13. B. Bava Metzi`a 113a-b; Yad, Malveh veLoveh 2:2; SA CM 97:6. Over time, this principle was modified in order to combat fraud on the part of the borrower. On the other hand, the principle remains in force when it is clear that the borrower is a poor person. See Menachem Elon, Cherut haperat bedarkhey gevi’at hachov bamishpat ha`ivri (Jerusalem, 1964).
  14. The citation is Maimonides (Yad, Shekhenim 2:14). See M. Bava Batra 1:1 and the Talmud ad loc.
  15. M. Bava Batra 3:7; B. Bava Batra 59b-60a; Yad, Shekhenim 5:6 and 7:1ff.; SA CM 154 and 160:1, 3.
  16. The attribution is found in Resp. R. Meir of Rothenburg (ed. Prague), no. 1022.
  17. See in general Shiltey Giborim to Alfasi, Shevu`ot, fol. 17a, end.
  18. See Rashi ad loc.: the talebearer (holekh rakhil) is a kind of spy (holekh regilah) who enters the home of another to steal private information for use in gossip.
  19. Yad, De`ot 7:1ff.
  20. See Leviticus Rabah 16, which expands the biblical word metzora (leper) to motzi shem ra (slanderer).
  21. Vilna, 1873. The book’s title is suggested by Psalms 34:13-14, in which the one who “desires life” (hechafetz chayim) is counseled to “keep your tongue from evil.” See also Lev. Rabah 16:2. In fact, the word “mussar” does not entirely do the book justice: its arrangement into sections, chapters and halakhot, much like Rambam’s Mishneh Torah, suggests that its author takes his subject with all seriousness, seeing the topic as one of law as well as social propriety.
  22. Chafetz Chayim, Introduction.
  23. Chafetz Chayim, Hilkhot Rekhilut 1:1-3.
  24. For the details of this mitzvah see B. Bava Metzi`a 31a and Yad, De`ot 6:7-9.
  25. B. Shevuot 39a-b.
  26. Ein lekha davar she`omed bifney pikuach nefesh; B. Ketubot 19a. See Yad, Yesodey Hatorah 5:1 and SA YD 157:1.
  27. See our responsum 5750.3 in Teshuvot for the Nineties (TFN), 283-288, and R. Eliezer Waldenberg, Resp. Tzitz Eliezer 13:81, part 2, for analysis of the question whether a vow that requires one to violate a mitzvah (in this case, the duty to save life) is valid under Jewish law.
  28. See Resp. Chelkat Mechokek 3:136 (Even Ha`ezer 79), who rules that a physician is obligated to reveal to a woman the fact that her fiancee suffers from cancer. And see Chafetz Chayim, Hilkhot Rekhilut 9:1ff: to reveal information that spares a person from physical or monetary damage does not violate the prohibition against gossip.
  29. TFN, no. 5750.1. This conclusion is modified by two conditions. First, its validity is very much a matter of empirical evidence: should the incidence of AIDS in the general population grow to significant proportions, compulsory testing might well be warranted. Second, an individual who has engaged in behavior that places him/her at risk of being a carrier of HIV is indeed morally obligated to be tested or to reveal the facts of his/her sexual history to potential sexual partners.
  30. Teshuvot for the Nineties, no. 5750.4, 187-190.
  31. We would add that, according to an established principle of Jewish law (safek safeka lekula; B. Kiddushin 75a and elsewhere), the presence of two elements of uncertainty in the facts of a case is held to warrant a lenient ruling:. In the present instance, “leniency” means that you would not be required to reveal this information
  32. Based upon Proverbs 25:9, the Rabbis deduced a prohibition against the revelation of secrets; see M. Sanhedrin 3:7. The discussion there centers upon courtroom procedure (see Yad, Sanhedrin 22:7), but the analogy applies well to our case: the Placement Commission functions as an administrative (and hence quasi-legal) agency, governed by formal rules, whose decisions have a concrete impact upon the lives of those who fall under its jurisdiction. The members of the Placement Commission, like the judges of a court, have no business revealing secret information.
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